BNMDR-SMA (BNMDR-SMA)
- Status: active
- Unique ID: patient ID and year of collection and date of last follow-up
- How to create a CSV file for this data collection?
- Start date: 14/05/2023
1 Patient identification
Section help
The current form has been designed in English. Depending on your language setting, automatic translation of words in Dutch or French can occur. We advise you to directly use English as a default language setting.
Date of last follow-up
Help
Please make sure the year matches the current collection year, except for reporting a death. In that case, the date of death should be entered.
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_LAST_FLLWUP
Required:
true
Validation
- Date of enrolment cannot be after date of last follow-up (error)
- Date of consent cannot be after date of last follow-up (error)
- Date of last follow-up cannot be in the future (error)
- Date of last follow-up cannot be before date of birth (error)
- Date of first symptoms cannot be after date of last follow-up (error)
- date last follow-up minus date of birth should be lower than or equal to 100 years old (error)
- Year of date of last follow-up should be between 1 year before year of data collection and 1 year after year of data collection (error)
Year of data collection
Technical specs
CSV column name:
CD_YR_COLCN
Required:
true
Options
| Label | Value |
| 2022 | 6 |
| 2023 | 7 |
| 2024 | 8 |
Validation
- Year of date of last follow-up should be between 1 year before year of data collection and 1 year after year of data collection (error)
National registry ID of the patient
Help
Please encode a social security identification number (SSIN). Please note that the patient ID is always pseudonymised before being transferred to Healthdata.
Technical specs
CSV column name:
patient_id
Required:
true
Stable:
true
Mapping of the clinical building blocks (indicative only)
Concept:
Patient-v3.2
Data element:
PatientIdentificationNumber
Validation
The validity of the national register number is checked with the mod97 check.
Fields
Section help
Please encode a social security identification number (SSIN). Please note that the patient ID is always pseudonymised before being transferred to Healthdata.
Internal patient ID
Help
This field can be used to enter an internal ID or reference number. It is available for internal use only and is not transferred to Healthdata. If there is an integration between HD4DP and your organisation's patient administration system, additional patient identification information such as date of birth, sex and SSIN can be automatically enriched based on this internal patient ID. Please do not encode the social security identification number (SSIN) in this field. The SSIN must be encoded in the field 'National registry ID of the patient'.
Technical specs
CSV column name:
patient_id|internal_patient_id
Required:
false
Stable:
true
Mapping of the clinical building blocks (indicative only)
Concept:
Patient-v3.2
Data element:
PatientIdentificationNumber
Generated
Help
The patient_id|generated column can be set to 'TRUE' for an automatically generated patient_id.This column should only be added in case the patient_id is empty. If the column is set to 'TRUE', a patient_id is automatically generated based on the name, first name, date of birth and sex of the patient.
Technical specs
CSV column name:
patient_id|generated
Required:
false
Options
| Label | Value |
| Yes | TRUE |
| No | FALSE |
Name
Help
The name of the patient is never transferred to Healthdata and is available for your information only.
Technical specs
CSV column name:
patient_id|name
Required:
noSSIN(Needed only if no national register number is entered)
Stable:
true
Mapping of the clinical building blocks (indicative only)
Concept:
Patient-v3.2:NameInformation-v1.1
Data element:
LastName
First name
Help
The first name of the patient is never transferred and is available for your information only.
Technical specs
CSV column name:
patient_id|first_name
Required:
noSSIN(Needed only if no national register number is entered)
Stable:
true
Mapping of the clinical building blocks (indicative only)
Concept:
Patient-v3.2:NameInformation-v1.1
Data element:
FirstNames
Date of birth
Technical specs
Format:
DD/MM/YYYY
CSV column name:
patient_id|date_of_birth
Required:
noSSIN(Needed only if no national register number is entered)
Stable:
true
Mapping of the clinical building blocks (indicative only)
Concept:
Patient-v3.2
Data element:
DateOfBirth
Validation
- Date of death cannot be before date of birth (error)
- Date of birth cannot be in the future (error)
- Date of first symptoms cannot be before date of birth (error)
- Date of Clinician CGI-S score given cannot be before date of birth (error)
- ACTIVLIM date cannot be before date of birth (error)
- Date of consent cannot be before date of birth (error)
- Date of genetic diagnosis cannot be more than 10 months before date of birth date of birth (error)
- Date of enrolment cannot be before date of birth (error)
- Date of convention cannot be before date of birth (error)
- PGI-S date cannot be before date of birth (error)
- PGI-I date cannot be before date of birth (error)
- Date of CGI-I score given cannot be before date of birth (error)
- Cobb angle date cannot be before date of birth (error)
- Date of scoliosis surgery cannot be before date of birth (error)
- Date of last follow-up cannot be before date of birth (error)
- date last follow-up minus date of birth should be lower than or equal to 100 years old (error)
Sex
Help
If Unknown is selected, please add the reason in a comment (for example, patient is intersex or no sex specified on the pertinent document).
Technical specs
CSV column name:
patient_id|sex
Required:
noSSIN(Needed only if no national register number is entered)
Stable:
true
Options
| Label | Value |
| Female | F |
| Male | M |
| Unknown | U |
Mapping of the clinical building blocks (indicative only)
Concept:
Patient-v3.2
Data element:
Sex
Place of residence
Technical specs
CSV column name:
patient_id|place_of_residence
Reference list:
POSTAL_CODE
Required:
true
Stable:
true
Mapping of the clinical building blocks (indicative only)
Concept:
Patient-v3.2
Data element:
Municipality
Deceased?
Technical specs
CSV column name:
patient_id|deceased
Only when:
Required:
false
Options
| Label | Value |
| Yes | TRUE |
| No | FALSE |
Date of death
Technical specs
Format:
DD/MM/YYYY
CSV column name:
patient_id|date_of_death
Only when:
Required:
false
PPRL code
Technical specs
CSV column name:
TX_PPRL_CD
Required:
false
Stable:
true
Is the patient alive?
Technical specs
CSV column name:
CD_PAT_ALV
Required:
true
Stable:
true
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
| Unknown | 99 |
Mapping of the clinical building blocks (indicative only)
Concept:
Patient-v3.2
Data element:
DeathIndicator
Date of death
Help
Guidebook: If only month and year are known, enter 15/mm/yyyy; If only the year is known (i.e., patient died in YYYY), enter 01/07/yyyy.
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_DEATH
Only when:
Required:
false
Stable:
true
Mapping of the clinical building blocks (indicative only)
Concept:
Patient-v3.2
Data element:
DateOfDeath
Validation
- Date of death cannot be in the future (error)
- Date of death cannot be before date of birth (error)
- Date of first symptoms cannot be after date of death (error)
- Date of enrolment cannot be after date of death (error)
- Date of consent cannot be after date of death (error)
- Date of Clinician CGI-S score given cannot be after date of death (error)
- Date of convention cannot be after date of death (error)
- ACTIVLIM date cannot be after date of death (error)
- PGI-S date cannot be after date of death (error)
- PGI-I date cannot be after date of death (error)
- Date of CGI-I score given cannot be after date of death (error)
- Cobb angle date cannot be after date of death (error)
- Date of scoliosis surgery cannot be after date of death (error)
- PCF date cannot be after date of death (error)
Cause of death
Help
This is the final condition that led to the death of the patient. Use "Z78.9 - Other specified health status" if you can not find a correct ICD-10 code and specify in the free text field. In case of euthanasia, use "Z78.9 - Other specified health status" and specify "euthanasia" in the free text field. In case of unknown cause of death, use “ZZZZ – Unknown".
Technical specs
CSV column name:
CD_COD
Reference list:
ICD10CM_2019
Only when:
Required:
false
Stable:
true
Please specify
Technical specs
CSV column name:
TX_COD_OTH
Only when:
Required:
false
Stable:
true
2 Health professional
Health professional
This is a container for multiple answers. See the reference documentation for more details. Below you can find the information about the fields of the container
Help
The RIZIV/INAMI code of the treating physician. If there are multiple treating physicians, multiple codes can be added. This information is encoded upon storage and can be decoded for two purposes only: 1) for individual and personalised feedback based on the collected data 2) for the award of the telematics premium by the RIZIV/INAMI (agreement medical doctors-health insurers).
List items
Section help
The RIZIV/INAMI code of the treating physician. If there are multiple treating physicians, multiple codes can be added. This information is encoded upon storage and can be decoded for two purposes only: 1) for individual and personalised feedback based on the collected data 2) for the award of the telematics premium by the RIZIV/INAMI (agreement medical doctors-health insurers).
Health professional identification number
Technical specs
CSV column name:
TX_TTL_HPIN|CD_RIZIV_TREAT_PHYS
Reference list:
PHYSICIAN
Required:
true
Stable:
true
Mapping of the clinical building blocks (indicative only)
Concept:
HealthProfessional-v3.5
Data element:
HealthProfessionalIdentificationNumber
3 Enrolment
Date of enrolment
Help
The date of enrolment corresponds to the first visit of the patient in your center.
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_ENRLMT
Required:
true
Stable:
true
Mapping of the clinical building blocks (indicative only)
Concept:
Encounter-v4.0.1
Data element:
StartDateTime
Validation
- Date of enrolment cannot be in the future (error)
- Date of enrolment cannot be after date of death (error)
- Date of enrolment cannot be before date of birth (error)
- Date of enrolment cannot be after date of last follow-up (error)
Date of consent
Help
The date of consent corresponds to the date the patient signed the first informed consent form.
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_CNSN
Required:
true
Stable:
true
Validation
- Date of consent cannot be in the future (error)
- Date of consent cannot be after date of death (error)
- Date of consent cannot be before date of birth (error)
- Date of consent cannot be after date of last follow-up (error)
Was a re-consent given?
Technical specs
CSV column name:
CD_RECNSN
Required:
true
Stable:
true
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
Validation
- Please complete the 'Re-consents' information (error)
Re-consents
This is a container for multiple answers. See the reference documentation for more details. Below you can find the information about the fields of the container
Element conditions
| Message | Expression |
| Date of any re-consents cannot be in the future | typeof $.DT_RECNSN === 'string'?new Date($.DT_RECNSN) |
| Date of any re-consents cannot be after date of death | typeof $.DT_RECNSN === 'string' && typeof $$.document.target.value.DT_DEATH === 'string'?$$.document.target.value.DT_DEATH >= $.DT_RECNSN:true |
| The date of any re-consents cannot be before date of birth | typeof $.DT_RECNSN === 'string' && typeof $$.document.target.value.patient_id.date_of_birth === 'string'?$.DT_RECNSN >= $$.document.target.value.patient_id.date_of_birth:true |
| Date of any re-consents cannot be after date of last follow-up | typeof $.DT_RECNSN === 'string' && typeof $$.document.target.value.DT_LAST_FLLWUP === 'string'?$$.document.target.value.DT_LAST_FLLWUP >= $.DT_RECNSN:true |
| Date of any re-consents cannot be before or equal to date of consent | typeof $.DT_RECNSN === 'string' && typeof $$.document.target.value.DT_CNSN === 'string'?$.DT_RECNSN > $$.document.target.value.DT_CNSN:true |
List items
Date of any re-consents
Help
The date of re-consent corresponds to the date the patient signed the renewed informed consent form.
Technical specs
Format:
DD/MM/YYYY
CSV column name:
TX_TTL_RECNSN|DT_RECNSN
Required:
true
4 Convention
Is the patient 'in convention'?
Technical specs
CSV column name:
CD_IN_CONVT
Required:
true
Options
| Label | Value |
| Yes | 1 |
| In the process (patient has been seen in your center this year, once or twice, but the paperwork needed for the NIHDI is not complete) | 3 |
| No | 0 |
When did the convention prolongation begin?
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_IN_CONVT
Only when:
Required:
true
Validation
- Date of convention cannot be in the future (error)
- Date of convention cannot be before date of birth (error)
- Date of convention cannot be after date of death (error)
5 Family history
Other affected family members?
Technical specs
CSV column name:
CD_OTH_AFFECT_FAM_MEM
Required:
true
Stable:
true
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
| Unknown | 99 |
Mapping of the clinical building blocks (indicative only)
Concept:
FamilyHistory-v3.1
Data element:
Problem
Please state kinship (select all that apply)
Technical specs
CSV column name:
CD_FAM_KINSHIP
Only when:
Required:
false
Stable:
true
Options
| Label | Value |
| Mother | FL_FAM_MOTH |
| Father | FL_FAM_FATH |
| Daughter | FL_FAM_DAUGHT |
| Son | FL_FAM_SON |
| Brother | FL_FAM_BROTH |
| Half brother | FL_FAM_HALF_BROTH |
| Sister | FL_FAM_SIST |
| Half sister | FL_FAM_HALF_SIST |
| Niece | FL_FAM_NIECE |
| Nephew | FL_FAM_NEPH |
| Maternal uncle | FL_FAM_MATER_UNCLE |
| Paternal uncle | FL_FAM_PATER_UNCLE |
| Maternal aunt | FL_FAM_MATER_AUNT |
| Paternal aunt | FL_FAM_PATER_AUNT |
| Maternal cousin | FL_FAM_MATER_COUSN |
| Paternal cousin | FL_FAM_PATER_COUSN |
| Maternal grandfather | FL_FAM_MATER_GFATH |
| Paternal grandfather | FL_FAM_PATER_GFATH |
| Maternal grandmother | FL_FAM_MATER_GMOTH |
| Paternal grandmother | FL_FAM_PATER_GMOTH |
| Granddaughter | FL_FAM_GDAUGHT |
| Grandson | FL_FAM_GSON |
Mapping of the clinical building blocks (indicative only)
Concept:
FamilyHistory-v3.1
Data element:
Comment
6 Genetic diagnosis
Final diagnosis
Technical specs
CSV column name:
CD_FINL_DIAGS
Required:
true
Stable:
true
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
Validation
- If genetic confirmation is equal to "yes" then final diagnosis should also be "yes" (error)
Date of final diagnosis
Help
Guidebook: If you know the exact date, enter dd/mm/yyyy ; If only month and year are known, enter 15/mm/yyyy ; If only the year is known (i.e., final diagnosis in yyyy), enter 01/07/yyyy. Please use the date of the initial conclusive genetic report as date of final diagnosis.
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_FINL_DIAGS
Only when:
Required:
true
Stable:
true
Validation
- Date of final diagnosis cannot be in the future (error)
Has the patient had genetic confirmation of SMA?
Help
This item applies to 5q SMA
Technical specs
CSV column name:
CD_DIAGS_CONFRM_GENET_TEST
Required:
true
Stable:
true
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
| Unknown | 99 |
Mapping of the clinical building blocks (indicative only)
Concept:
LaboratoryTestResult-v4.6
Data element:
ResultInterpretation
Validation
- If genetic confirmation is equal to "yes" then final diagnosis should also be "yes" (error)
Was it through screening?
Technical specs
CSV column name:
CD_SCRNG
Only when:
Required:
true
Stable:
true
Options
| Label | Value |
| Yes, family screening | 1 |
| Yes, newborn screening programme | 2 |
| Yes, prenatal screening | 3 |
| No | 0 |
| Unknown | 99 |
Mapping of the clinical building blocks (indicative only)
Concept:
Procedure-v5.2
Data element:
ProcedureType
Date of genetic diagnosis
Help
Guidebook: If only month and year are known, enter 15/mm/yyyy ; If only the year is known (i.e., genetic report dates from yyyy), enter 01/07/yyyy. Please complete the questions below with the data from the most recent genetic report.
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_GENET_DIAGS
Only when:
Required:
true
Stable:
true
Mapping of the clinical building blocks (indicative only)
Concept:
LaboratoryTestResult-v4.6
Data element:
TestDateTime
Validation
- Date of genetic diagnosis cannot be in the future (error)
- Date of genetic diagnosis cannot be more than 10 months before date of birth date of birth (error)
Name/location of genetic testing centre
Technical specs
CSV column name:
CD_GENET_TEST_CENTRE
Only when:
Required:
true
Stable:
true
Options
| Label | Value |
| CENTER FOR HUMAN GENETICS LIEGE PATHOLOGY INSTITUTE (B23) 3DR FLOOR ROOM 3/14B | 86299019 |
| CENTRE DE GENETIQUE MEDICALE UCL | 82699032 |
| CENTRE DE GENETIQUE HUMAINE - INSTITUT DE PATHOLOGIE ET DE GENETIQUE | 85299028 |
| CENTRE DE GÉNÉTIQUE HUMAINE U.L.B | 82899069 |
| CENTRUM MEDISCHE GENETICA UZA | 81199094 |
| CENTRUM VOOR MEDISCHE GENETICA VUB | 82999039 |
| CENTRUM MEDISCHE GENETICA GENT | 84499074 |
| CENTRUM MENSELIJKE ERFELIJKHEID KUL | 82499092 |
| Other | 74964007 |
Mapping of the clinical building blocks (indicative only)
Concept:
HealthcareProvider-v3.4
Data element:
OrganizationName
Mutation name in SMN1 gene
Technical specs
CSV column name:
CD_MUTAT_NAM_SMN1_GENE
Only when:
Required:
true
Stable:
true
Options
| Label | Value |
| del 7 (c.724_834del) | 1 |
| del 7-8 (c. 724_885del) | 2 |
| Other | 3 |
Mapping of the clinical building blocks (indicative only)
Concept:
LaboratoryTestResult-v4.6
Data element:
ResultInterpretation
Other mutation name in SMN1 gene
Technical specs
CSV column name:
CD_OTH_MUTAT_NAM_SMN1_GENE
Only when:
Required:
true
Stable:
true
Options
| Label | Value |
| Compound heterozygous deletion exon 7 and a substitution | 1 |
| Compound heterozygous deletion exons 7-8 and substitution | 2 |
| Compound heterozygous for two substitutions in SMN1 | 3 |
| Homozygous for one substitution in SMN1 | 4 |
Mapping of the clinical building blocks (indicative only)
Concept:
LaboratoryTestResult-v4.6
Data element:
ResultInterpretation
Please specify the genotype
Help
Please use HGVS nomenclature
Technical specs
CSV column name:
TX_SPECIF_GENTPE
Only when:
Required:
true
Stable:
true
Mapping of the clinical building blocks (indicative only)
Concept:
LaboratoryTestResult-v4.6
Data element:
ResultInterpretation
Method of SMN1 testing
Technical specs
CSV column name:
CD_METH_SMN1_TEST
Only when:
Required:
true
Stable:
true
Options
| Label | Value |
| RFLP (Restriction Fragment Length Polymorphism) | 1 |
| HRM (High Resolution Melting) | 2 |
| MLPA (Multiplex Ligation-dependent Probe Amplification) | 3 |
| Luminex Genotyping / DNA Sequencing | 4 |
| qrtPCR (Quantitative Real-Time PCR) | 5 |
| ddPCR (Droplet Digital PCR) | 6 |
| Other | 7 |
| Unknown | 99 |
Mapping of the clinical building blocks (indicative only)
Concept:
LaboratoryTestResult-v4.6
Data element:
TestMethod
Please specify the other method of SMN1 testing
Technical specs
CSV column name:
TX_OTH_METH_SMN1_TEST
Only when:
Required:
true
Stable:
true
Mapping of the clinical building blocks (indicative only)
Concept:
LaboratoryTestResult-v4.6
Data element:
TestMethod
Was SMN2 copy number tested?
Technical specs
CSV column name:
CD_SMN2_CPY_NR_TEST
Only when:
Required:
true
Stable:
true
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
Mapping of the clinical building blocks (indicative only)
Concept:
LaboratoryTestResult-v4.6
Data element:
TestCode
Method of SMN2 testing
Technical specs
CSV column name:
CD_METH_SMN2_TEST
Only when:
Required:
true
Stable:
true
Options
| Label | Value |
| RFLP (Restriction Fragment Length Polymorphism) | 1 |
| HRM (High Resolution Melting) | 2 |
| MLPA (Multiplex Ligation-dependent Probe Amplification) | 3 |
| Luminex Genotyping / DNA Sequencing | 4 |
| qrtPCR (Quantitative Real-Time PCR) | 5 |
| ddPCR (Droplet Digital PCR) | 6 |
| Other | 7 |
| Unknown | 99 |
Mapping of the clinical building blocks (indicative only)
Concept:
LaboratoryTestResult-v4.6
Data element:
TestMethod
Please specify the other method of SMN2 testing
Technical specs
CSV column name:
TX_OTH_METH_SMN2_TEST
Only when:
Required:
true
Stable:
true
Mapping of the clinical building blocks (indicative only)
Concept:
LaboratoryTestResult-v4.6
Data element:
TestMethod
SMN2 copy number
Technical specs
CSV column name:
CD_SMN2_CPY_NR
Only when:
Required:
true
Stable:
true
Options
| Label | Value |
| 1 | 1 |
| 2 | 2 |
| 3 | 3 |
| 4+ | 4 |
Mapping of the clinical building blocks (indicative only)
Concept:
LaboratoryTestResult-v4.6
Data element:
TestResult
Was the variant c.859G>C identified in the SMN2 gene?
Technical specs
CSV column name:
CD_SMN2_VARNT_TEST_IDEN
Only when:
Required:
false
Stable:
true
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
| Not assessed | 2 |
| Unknown | 99 |
Method of SMN2 variant testing
Technical specs
CSV column name:
CD_METH_SMN2_VARNT_TEST
Only when:
Required:
false
Stable:
true
Options
| Label | Value |
| RFLP (Restriction Fragment Length Polymorphism) | 1 |
| HRM (High Resolution Melting) | 2 |
| MLPA (Multiplex Ligation-dependent Probe Amplification) | 3 |
| Luminex Genotyping / DNA Sequencing | 4 |
| qrtPCR (Quantitative Real-Time PCR) | 5 |
| ddPCR (Droplet Digital PCR) | 6 |
| Other | 7 |
| Unknown | 99 |
Please specify the other method of SMN2 variant testing
Technical specs
CSV column name:
TX_METH_SMN2_VARNT_TEST_OTH
Only when:
Required:
false
Stable:
true
7 Clinical observations
Age of symptom onset
Help
At what age was it suspected that something was different?
Technical specs
CSV column name:
CD_AGE_SYMP_ONST
Required:
true
Stable:
true
Options
| Label | Value |
| Prenatal | 1 |
| At birth or up to two weeks of age | 4 |
| Postnatal (two weeks of age or older) | 3 |
| Asymptomatic | 5 |
| Other | 2 |
| Unknown | 99 |
Validation
- If age of symptom onset is equal to asymptomatic then CGI-S should be 1= Not at all affected (error)
- If age of symptom onset is equal to asymptomatic then shoulder contractures should be "no" (error)
- If age of symptom onset is equal to asymptomatic then shoulder contractures should be "no" (error)
- If age of symptom onset is equal to asymptomatic then wrist contractures should be "no" (error)
- If age of symptom onset is equal to asymptomatic then finger contractures should be "no" (error)
- If age of symptom onset is equal to asymptomatic then hip contractures should be "no" (error)
- If age of symptom onset is equal to asymptomatic then knee contractures should be "no" (error)
- If age of symptom onset is equal to asymptomatic then ankle contractures should be "no" (error)
- If age of symptom onset is equal to asymptomatic then speech difficulties should be "normal" (error)
- If age of symptom onset is equal to asymptomatic then jaw contractures should be "no" (error)
- If age of symptom onset is equal to asymptomatic then salivation difficulties should be "normal" (error)
- If age of symptom onset is equal to asymptomatic then swallowing difficulties should be "normal" (error)
- If age of symptom onset is equal to asymptomatic then stage of disease should be "pre-symptomatic" (error)
- If age of symptom onset is equal to asymptomatic then symptoms at moment of diagnosis should be "no symptoms" (error)
Date of first symptoms
Help
If you know the exact date, enter dd/mm/yyyy ; If only month and year are known, enter 15/mm/yyyy ; If only the year is known (i.e., first symptoms started in yyyy), enter 01/07/yyyy ; If a duration is known (i.e., first symptoms started X years ago), enter 01/07/current year – X ; If only an age is known (i.e., first symptoms started when I was X years old), enter birthday/birthmonth/birthyear + X.
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_FIRST_SYMP
Only when:
Required:
true
Stable:
true
Validation
- Date of first symptoms cannot be in the future (error)
- Date of first symptoms cannot be before date of birth (error)
- Date of first symptoms cannot be after date of death (error)
- Date of first symptoms cannot be after date of last follow-up (error)
Patient gestational age at birth
Help
Please complete for all pediatric patients
Technical specs
CSV column name:
CD_GA_BIRTH
Only when:
Required:
true
Stable:
true
Options
| Label | Value |
| > 35 weeks | 1 |
| 33-35 weeks | 2 |
| 28-32 weeks | 3 |
| 4 | |
| Unknown | 99 |
What were the patient's symptoms at the moment of diagnosis?
Help
Please complete for all pediatric patients
Technical specs
CSV column name:
CD_SYMP_DIAGS
Only when:
Required:
true
Stable:
true
Options
| Label | Value |
| Hypotonia | FL_SYMP_DIAGS_HYPO |
| Limb weakness | FL_SYMP_DIAGS_WEAK |
| Pneumonia | FL_SYMP_DIAGS_PNEUMO |
| Respiratory symptoms | FL_SYMP_DIAGS_RESPI |
| Swallowing difficulties | FL_SYMP_DIAGS_SWALL |
| Feeding difficulties | FL_SYMP_DIAGS_FEED |
| Tongue fasciculations | FL_SYMP_DIAGS_TONG |
| Developmental delay | FL_SYMP_DIAGS_DELAY |
| Constipation | FL_SYMP_DIAGS_CONSTI |
| Other | FL_SYMP_DIAGS_OTH |
| No symptom | FL_SYMP_DIAGS_NOSYMP |
| Unknown | FL_SYMP_DIAGS_UNK |
Validation
- If age of symptom onset is equal to asymptomatic then symptoms at moment of diagnosis should be "no symptoms" (error)
Other symptoms
Technical specs
CSV column name:
TX_OTH_SYMP
Only when:
Required:
true
Stable:
true
Is height/length measurement available?
Help
Please enter all measurements taken during the collection year and keep in mind to enter a value prior to treatment if applicable.
Technical specs
CSV column name:
CD_HGHT
Required:
true
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
| Unknown | 99 |
Validation
- Please complete the 'Height/length' information (error)
Height/length
This is a container for multiple answers. See the reference documentation for more details. Below you can find the information about the fields of the container
Element conditions
| Message | Expression |
| Height/length (cm) cannot contain more than 1 decimal | typeof $.MS_HGHT === 'number'?$.MS_HGHT*10%1===0:true |
| Date of height measurement cannot be before date of birth | typeof $.DT_HGHT_MSMENT === 'string' && typeof $$.document.target.value.patient_id.date_of_birth === 'string'?$.DT_HGHT_MSMENT >= $$.document.target.value.patient_id.date_of_birth:true |
| Date of height measurement cannot be after date of death | typeof $.DT_HGHT_MSMENT === 'string' && typeof $$.document.target.value.DT_DEATH === 'string'?$$.document.target.value.DT_DEATH >= $.DT_HGHT_MSMENT:true |
| Date of height measurement cannot be in the future | typeof $.DT_HGHT_MSMENT === 'string'?new Date($.DT_HGHT_MSMENT) |
List items
Date of measurement
Technical specs
Format:
DD/MM/YYYY
CSV column name:
TX_TTL_HGHT|0|DT_HGHT_MSMENT
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
BodyHeight-v3.1.1
Data element:
HeightDateTime
Height/length (cm)
Technical specs
CSV column name:
TX_TTL_HGHT|0|MS_HGHT
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
BodyHeight-v3.1.1
Data element:
HeightValue
Method of height measurement
Technical specs
CSV column name:
TX_TTL_HGHT|0|CD_METH_HGHT_MSMENT
Required:
true
Options
| Label | Value |
| Standing height | 1 |
| Recumbent length | 2 |
| Arm span | 3 |
| Ulnar length | 4 |
| Other | 5 |
Mapping of the clinical building blocks (indicative only)
Concept:
BodyHeight-v3.1.1
Data element:
Position
Please specify the other method of height measurement
Technical specs
CSV column name:
TX_TTL_HGHT|0|TX_OTH_METH_HGHT_MSMENT
Only when:
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
BodyHeight-v3.1.1
Data element:
Position
Is weight measurement available?
Help
Please enter all measurements taken during the collection year and keep in mind to enter a value prior to treatment if applicable.
Technical specs
CSV column name:
CD_WGHT
Required:
true
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
| Unknown | 99 |
Validation
- Please complete the 'Weight' information (error)
Weight
This is a container for multiple answers. See the reference documentation for more details. Below you can find the information about the fields of the container
Element conditions
| Message | Expression |
| Weight (kg) cannot contain more than 1 decimal | typeof $.MS_WGHT === 'number'?$.MS_WGHT*10%1===0:true |
| Date of weight measurement cannot be before date of birth | typeof $.DT_WGHT_MSMENT === 'string' && typeof $$.document.target.value.patient_id.date_of_birth === 'string'?$.DT_WGHT_MSMENT >= $$.document.target.value.patient_id.date_of_birth:true |
| Date of weight measurement cannot be after date of death | typeof $.DT_WGHT_MSMENT === 'string' && typeof $$.document.target.value.DT_DEATH === 'string'?$$.document.target.value.DT_DEATH >= $.DT_WGHT_MSMENT:true |
| Date of weight measurement cannot be in the future | typeof $.DT_WGHT_MSMENT === 'string'?new Date($.DT_WGHT_MSMENT) |
List items
Date of measurement
Technical specs
Format:
DD/MM/YYYY
CSV column name:
TX_TTL_WGHT|0|DT_WGHT_MSMENT
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
BodyWeight-v3.2
Data element:
WeightDateTime
Weight (kg)
Technical specs
CSV column name:
TX_TTL_WGHT|0|MS_WGHT
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
BodyWeight-v3.2
Data element:
WeightValue
Is head circumference (for infants <24 months old) measurement available?
Help
Please enter all measurements taken during the collection year and keep in mind to enter a value prior to treatment if applicable.
Technical specs
CSV column name:
CD_HEAD_CIRCUM
Only when:
Required:
true
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
| Unknown | 99 |
Head circumference (for infants
This is a container for multiple answers. See the reference documentation for more details. Below you can find the information about the fields of the container
Element conditions
| Message | Expression |
| Head circumference cannot contain more than 1 decimal | typeof $.MS_HEAD_CIRCUM === 'number'?$.MS_HEAD_CIRCUM*10%1===0:true |
| Date of head circumference measurement cannot be in the future | typeof $.DT_HEAD_CIRCUM === 'string'?new Date($.DT_HEAD_CIRCUM) |
| Date of head circumference measurement cannot be after date of death | typeof $.DT_HEAD_CIRCUM === 'string' && typeof $$.document.target.value.DT_DEATH === 'string'?$$.document.target.value.DT_DEATH >= $.DT_HEAD_CIRCUM:true |
| Date of head circumference measurement cannot be before date of birth | typeof $.DT_HEAD_CIRCUM === 'string' && typeof $$.document.target.value.patient_id.date_of_birth === 'string'?$.DT_HEAD_CIRCUM >= $$.document.target.value.patient_id.date_of_birth:true |
List items
Date of measurement
Technical specs
Format:
DD/MM/YYYY
CSV column name:
TX_TTL_HEAD_CIRCUM|0|DT_HEAD_CIRCUM
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
HeadCircumference-v1.3
Data element:
HeadCircumferenceDate
Head circumference (for infants
Technical specs
CSV column name:
TX_TTL_HEAD_CIRCUM|0|MS_HEAD_CIRCUM
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
HeadCircumference-v1.3
Data element:
HeadCircumferenceMeasurement
Does the patient suffer from shoulder contractures?
Technical specs
CSV column name:
CD_SHLDR_CONTR
Required:
false
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
| Unknown | 99 |
Mapping of the clinical building blocks (indicative only)
Concept:
Problem-v4.2
Data element:
ProblemAnatomicalLocation
Validation
- If age of symptom onset is equal to asymptomatic then shoulder contractures should be "no" (error)
Does the patient suffer from elbow contractures?
Technical specs
CSV column name:
CD_ELBOW_CONTR
Required:
false
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
| Unknown | 99 |
Mapping of the clinical building blocks (indicative only)
Concept:
Problem-v4.2
Data element:
ProblemAnatomicalLocation
Validation
- If age of symptom onset is equal to asymptomatic then shoulder contractures should be "no" (error)
Does the patient suffer from wrist contractures?
Technical specs
CSV column name:
CD_WRIST_CONTR
Required:
false
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
| Unknown | 99 |
Mapping of the clinical building blocks (indicative only)
Concept:
Problem-v4.2
Data element:
ProblemAnatomicalLocation
Validation
- If age of symptom onset is equal to asymptomatic then wrist contractures should be "no" (error)
Does the patient suffer from finger contractures?
Technical specs
CSV column name:
CD_FINGR_CONTR
Required:
false
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
| Unknown | 99 |
Mapping of the clinical building blocks (indicative only)
Concept:
Problem-v4.2
Data element:
ProblemAnatomicalLocation
Validation
- If age of symptom onset is equal to asymptomatic then finger contractures should be "no" (error)
Does the patient suffer from hip contractures?
Technical specs
CSV column name:
CD_HIP_CONTR
Required:
false
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
| Unknown | 99 |
Mapping of the clinical building blocks (indicative only)
Concept:
Problem-v4.2
Data element:
ProblemAnatomicalLocation
Validation
- If age of symptom onset is equal to asymptomatic then hip contractures should be "no" (error)
Does the patient suffer from knee contractures?
Technical specs
CSV column name:
CD_KNEE_CONTR
Required:
false
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
| Unknown | 99 |
Mapping of the clinical building blocks (indicative only)
Concept:
Problem-v4.2
Data element:
ProblemAnatomicalLocation
Validation
- If age of symptom onset is equal to asymptomatic then knee contractures should be "no" (error)
Does the patient suffer from ankle contractures?
Technical specs
CSV column name:
CD_ANKLE_CONTR
Required:
false
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
| Unknown | 99 |
Mapping of the clinical building blocks (indicative only)
Concept:
Problem-v4.2
Data element:
ProblemAnatomicalLocation
Validation
- If age of symptom onset is equal to asymptomatic then ankle contractures should be "no" (error)
Does the patient suffer from jaw contractures?
Technical specs
CSV column name:
CD_JAW_CONTR
Required:
false
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
| Unknown | 99 |
Mapping of the clinical building blocks (indicative only)
Concept:
Problem-v4.2
Data element:
ProblemAnatomicalLocation
Validation
- If age of symptom onset is equal to asymptomatic then jaw contractures should be "no" (error)
Does the patient suffer from speech difficulties ?
Technical specs
CSV column name:
CD_SPEECH_DIFFCT
Required:
true
Options
| Label | Value |
| Speech is normal (score 4) | 1 |
| Detectable speech disturbance (score 3) | 2 |
| Intelligible with repeating (score 2) | 3 |
| Speech combined with non-vocal communications (score 1) | 4 |
| Loss of useful speech (score 0) | 5 |
| Unknown | 99 |
Validation
- If age of symptom onset is equal to asymptomatic then speech difficulties should be "normal" (error)
Does the patient suffer from salivation difficulties ?
Technical specs
CSV column name:
CD_SALTN_DIFFCT
Required:
true
Options
| Label | Value |
| Salivation is normal (score 4) | 1 |
| Slight but definite excess of saliva in mouth; may have nighttime drooling (score 3) | 2 |
| Moderately excessive saliva; may have minimal drooling (score 2) | 3 |
| Marked excess of saliva with some drooling (score 1) | 4 |
| Marked drooling; requires constant tissue or handkerchief (score 0) | 5 |
| Unknown | 99 |
Validation
- If age of symptom onset is equal to asymptomatic then salivation difficulties should be "normal" (error)
Does the patient suffer from swallowing difficulties ?
Technical specs
CSV column name:
CD_SWAPROB
Required:
true
Options
| Label | Value |
| Swallowing is normal (score 4) | 1 |
| Early eating problems; occasional choking (score 3) | 2 |
| Dietary consistency changes (score 2) | 3 |
| Needs supplemental tube feedings (score 1) | 4 |
| Nothing by mouth (NPO); exclusively parenteral or enteral feeding (score 0) | 5 |
| Unknown | 99 |
Validation
- If age of symptom onset is equal to asymptomatic then swallowing difficulties should be "normal" (error)
Stage of disease
Technical specs
CSV column name:
CD_STG_DSEAS
Required:
true
Stable:
true
Options
| Label | Value |
| Pre-symptomatic | 1 |
| Symptomatic - not ambulant (only for patients | 5 |
| Ambulant | 2 |
| Loss of ambulation/wheel chair | 3 |
| Night-time ventilation | 6 |
| More than night-time ventilation | 7 |
Validation
- If stage of disease is equal to "loss of ambulation" then use of wheelchair cannot be "never" or "previously" (error)
- If stage of disease is equal to "symptomatic-not ambulant" then best motor function achieved cannot be "walking" (error)
- If stage of disease is equal to "ambulant" then best motor function achieved cannot be "neither" (error)
- If stage of disease is equal to "ambulant" then best motor function achieved cannot be "sitting" (error)
- If stage of disease is equal to "ambulant" then stand with assistance should be "yes" (error)
- If stage of disease is equal to "ambulant" then stand without assistance should be "yes" (error)
- If stage of disease is equal to "ambulant" then walk with assistance should be "yes" (error)
- If stage of disease is equal to "symptomatic-not ambulant" then walk without assistance should be "no" (error)
- If stage of disease is equal to "symptomatic-not ambulant" then walk 10 metres without assistance should be "no" (error)
- If stage of disease is equal to "symptomatic-not ambulant" then climb stairs should be "no" (error)
- If stage of disease is equal to "loss of ambulation" then walk without assistance should be "no" (error)
- If stage of disease is equal to "loss of ambulation" then walk 10 metres without assistance should be "no" (error)
- If stage of disease is equal to "loss of ambulation" then climb stairs should be "no" (error)
- If Why the patient did not receive Evrysdi despite being eligible is equal to "symptoms already too severe" then stage of disease cannot be "pre-symptomatic" (error)
- If age of symptom onset is equal to asymptomatic then stage of disease should be "pre-symptomatic" (error)
Was the CGI-S (Clinical Global Impression of Severity) taken?
Help
This item should be captured once per individual; after that, the Clinician Global Impression of Improvement (CGI-I) should be captured at each update.
Technical specs
CSV column name:
CD_CGIS
Required:
true
Stable:
true
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
Mapping of the clinical building blocks (indicative only)
Concept:
Measurement-v1.0
Data element:
MeasurementName
Validation
- If age of symptom onset is equal to asymptomatic then CGI-S should be 1= Not at all affected (error)
CGI-S (Clinical Global Impression of Severity) - Baseline only
Technical specs
CSV column name:
CD_CGIS_BL
Only when:
Required:
true
Stable:
true
Options
| Label | Value |
| 1 = Not at all affected | 1 |
| 2 = Borderline affected | 2 |
| 3 = Mildly affected | 3 |
| 4 = Moderately affected | 4 |
| 5 = Markedly affected | 5 |
| 6 = Severely affected | 6 |
| 7 = Among the most extremely affected individuals | 7 |
Mapping of the clinical building blocks (indicative only)
Concept:
Measurement-v1.0
Data element:
MeasurementValue
Validation
- If age of symptom onset is equal to asymptomatic then CGI-S should be 1= Not at all affected (error)
Date of Clinician CGI-S score given
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_CLIN_CGIS_BL_SCORE
Only when:
Required:
true
Stable:
true
Mapping of the clinical building blocks (indicative only)
Concept:
Measurement-v1.0
Data element:
MeasurementDateStartTime
Validation
- Date of Clinician CGI-S score given cannot be before date of birth (error)
- Date of Clinician CGI-S score given cannot be after date of death (error)
- Date of Clinician CGI-S score given cannot be in the future (error)
Was the Clinician Global Impression of Improvement (CGI-I) taken?
Help
This item should only be captured from clinicians at follow-up (the item Clinician Global Impression of Severity is used at baseline).
Technical specs
CSV column name:
CD_CGII
Required:
true
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
CGI-I (Clinican Global Impression of Improvement) - follow up only
Technical specs
CSV column name:
CD_CGII_FU
Only when:
Required:
true
Options
| Label | Value |
| 1 = Very much improved | 1 |
| 2 = Much improved | 2 |
| 3 = Minimally improved | 3 |
| 4 = No change | 4 |
| 5 = Minimally worse | 5 |
| 6 = Much worse | 6 |
| 7 = Very much worse | 7 |
Mapping of the clinical building blocks (indicative only)
Concept:
Measurement-v1.0
Data element:
MeasurementValue
Date of CGI-I score given
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_CGII_FU
Only when:
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
Measurement-v1.0
Data element:
MeasurementDateStartTime
Validation
- Date of CGI-I score given cannot be before date of birth (error)
- Date of CGI-I score given cannot be in the future (error)
- Date of CGI-I score given cannot be after date of death (error)
7.1 Classification
SMA Type prior to initial SMA Treatment
Technical specs
CSV column name:
CD_SMA_TPE_BEF_TREAT
Required:
true
Stable:
true
Options
| Label | Value |
| SMA 1 | 1 |
| SMA 2 | 2 |
| SMA 3 | 3 |
| SMA 4 | 4 |
| Undefined - discovered by neonatal screening | 5 |
| Patient is not treated | 6 |
| Unknown | 99 |
Mapping of the clinical building blocks (indicative only)
Concept:
Measurement-v1.0
Data element:
MeasurementValue
Validation
- If SMA type prior to treatment is equal to "patient is not treated" then has the patient ever received a disease-modifying therapy for SMA ? should be "no" (error)
Spinal Muscular Atrophy type
Help
Please assess the SMA type every data collection given the changing phenotype landscape due to treatment.
Technical specs
CSV column name:
CD_SMA_TPE
Required:
true
Stable:
true
Options
| Label | Value |
| SMA 1 | 1 |
| SMA 2 | 2 |
| SMA 3 | 3 |
| SMA 4 | 4 |
| Undefined - discovered by neonatal screening | 5 |
| Unknown | 99 |
Mapping of the clinical building blocks (indicative only)
Concept:
Problem-v4.2
Data element:
ProblemName
Validation
- If SMA type prior to treatment is equal to "patient is not treated" then has the patient ever received a disease-modifying therapy for SMA ? should be "no" (error)
- If SMA type is equal to "SMA1" then CRAMP should be "Spinal muscular atrophy type I (Werdnig-Hoffman), SMN1 gene, survival of motor neuron 1, telomeric" (error)
- If SMA type is equal to "SMA2" then CRAMP should be "Spinal muscular atrophy type II (intermediate), SMN1 gene, survival of motor neuron 1, telomeric" (error)
- If SMA type is equal to "SMA3" then CRAMP should be "Spinal muscular atrophy type III (Kugelberg-Welander), SMN1 gene, survival of motor neuron 1, telomeric" (error)
- If SMA type is equal to "SMA4" then CRAMP should be "Spinal muscular atrophy type IV (adult form), SMN1 gene, survival of motor neuron 1, telomeric" (error)
CRAMP classification
Help
Please first complete the CRAMP classification. All other classifications will be automatically completed consistently with your answer for the CRAMP classification.
Technical specs
CSV column name:
CD_CRAMP
Reference list:
SMA_CRAMP
Only when:
Required:
true
Stable:
true
Mapping of the clinical building blocks (indicative only)
Concept:
Problem-v4.2
Data element:
FurtherSpecification
Validation
- If SMA type is equal to "SMA1" then CRAMP should be "Spinal muscular atrophy type I (Werdnig-Hoffman), SMN1 gene, survival of motor neuron 1, telomeric" (error)
- If SMA type is equal to "SMA2" then CRAMP should be "Spinal muscular atrophy type II (intermediate), SMN1 gene, survival of motor neuron 1, telomeric" (error)
- If SMA type is equal to "SMA3" then CRAMP should be "Spinal muscular atrophy type III (Kugelberg-Welander), SMN1 gene, survival of motor neuron 1, telomeric" (error)
- If SMA type is equal to "SMA4" then CRAMP should be "Spinal muscular atrophy type IV (adult form), SMN1 gene, survival of motor neuron 1, telomeric" (error)
NIHDI classification
Technical specs
CSV column name:
CD_NIHDI
Reference list:
SMA_NIHDI
Only when:
Required:
true
Stable:
true
Mapping of the clinical building blocks (indicative only)
Concept:
Problem-v4.2
Data element:
FurtherSpecification
Orphanet classification
Technical specs
CSV column name:
CD_ORPH
Reference list:
SMA_ORPHA
Only when:
Required:
true
Stable:
true
Mapping of the clinical building blocks (indicative only)
Concept:
Problem-v4.2
Data element:
FurtherSpecification
ICD10 classification
Technical specs
CSV column name:
CD_ICD10
Reference list:
SMA_ICD10
Only when:
Required:
true
Stable:
true
Mapping of the clinical building blocks (indicative only)
Concept:
Problem-v4.2
Data element:
FurtherSpecification
OMIM gene classification
Technical specs
CSV column name:
CD_OMIM_GENET
Reference list:
SMA_OMIM
Only when:
Required:
true
Stable:
true
Mapping of the clinical building blocks (indicative only)
Concept:
Problem-v4.2
Data element:
FurtherSpecification
8 Scoliosis
Has the patient been diagnosed with scoliosis?
Technical specs
CSV column name:
CD_DIAGS_SCOL
Required:
true
Stable:
true
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
| Unknown | 99 |
Mapping of the clinical building blocks (indicative only)
Concept:
Problem-v4.2
Data element:
ProblemName
Thoracal Cobb angle according to radiology results (degrees)
Technical specs
CSV column name:
MS_THOR_COBB_ANGLE
Only when:
Required:
false
Stable:
true
Validation
- Thoracal Cobb angle according to radiology results (degrees) cannot contain more than 1 decimal (error)
Lumbar Cobb angle according to radiology results (degrees)
Technical specs
CSV column name:
MS_LUMB_COBB_ANGLE
Only when:
Required:
false
Stable:
true
Validation
- Lumbar Cobb angle according to radiology results (degrees) cannot contain more than 1 decimal (error)
Cobb angle date
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_COBB_ANGLE
Only when:
Required:
false
Stable:
true
Validation
- Cobb angle date cannot be before date of birth (error)
- Cobb angle date cannot be in the future (error)
- Cobb angle date cannot be after date of death (error)
Has the patient had surgery for the scoliosis?
Help
Surgery for invasive lengthening of growing rods must not be included here
Technical specs
CSV column name:
CD_SCOL_SURG
Only when:
Required:
true
Stable:
true
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
| Unknown | 99 |
Mapping of the clinical building blocks (indicative only)
Concept:
Procedure-v5.4
Data element:
ProcedureType
Date of scoliosis surgery
Help
Guidebook: If you know the exact date, enter dd/mm/yyyy ; If only month and year are known, enter 15/mm/yyyy ; If only the year is known (i.e., surgery took place in yyyy), enter 01/07/yyyy. Please enter the date of the most recent scoliosis surgery.
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_SCOL_SURG
Only when:
Required:
true
Stable:
true
Mapping of the clinical building blocks (indicative only)
Concept:
Procedure-v5.4
Data element:
ProcedureStartDate
Validation
- Date of scoliosis surgery cannot be before date of birth (error)
- Date of scoliosis surgery cannot be in the future (error)
- Date of scoliosis surgery cannot be after date of death (error)
9 Motor function
Best motor function achieved
Technical specs
CSV column name:
CD_BEST_MOTOR_FUNCN_ACHV
Required:
true
Stable:
true
Options
| Label | Value |
| Walking | 1 |
| Sitting | 2 |
| Neither | 3 |
Validation
- If stage of disease is equal to "symptomatic-not ambulant" then best motor function achieved cannot be "walking" (error)
- If stage of disease is equal to "ambulant" then best motor function achieved cannot be "neither" (error)
- If stage of disease is equal to "ambulant" then best motor function achieved cannot be "sitting" (error)
- If best motor function achieved is equal to "neither" then stand with assistance should be "no" (error)
- If best motor function achieved is equal to "neither" then stand without assistance should be "no" (error)
- If best motor function achieved is equal to "neither" then walk with assistance should be "no" (error)
- If best motor function achieved is equal to "neither" then walk without assistance should be "no" (error)
- If best motor function achieved is equal to "neither" then walk 10 metres without assistance should be "no" (error)
- If best motor function achieved is equal to "neither" then climb stairs should be "no" (error)
- If best motor function achieved is equal to "sitting" then climb stairs should be "no" (error)
- If best motor function achieved is equal to "sitting" then walk 10 metres without assistance should be "no" (error)
- If best motor function achieved is equal to "sitting" then walk without assistance should be "no" (error)
- If best motor function achieved is equal to "neither" then sit without support should be "no" (error)
Age at which best motor function is achieved
Help
Age at which the best motor function is achieved should be an integer.
Technical specs
CSV column name:
MS_AGE_BEST_MOTOR_FUNCN_ACHV
Required:
false
Stable:
true
Validation
- Age at which best motor function is achieved cannot contain more than 1 decimal (error)
SMA Function Status prior to initial SMA Treatment
Technical specs
CSV column name:
CD_SMA_BEF_INIT_TREAT
Required:
false
Stable:
true
Options
| Label | Value |
| Non-sitter | 1 |
| Sitter | 2 |
| Walker | 3 |
| Standing | 4 |
According to your observations, is the individual currently able to hold the head up without support?
Technical specs
CSV column name:
CD_HEAD_NO_SUPP
Required:
true
Stable:
true
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
| Unknown | 99 |
According to the patient or caregiver, has the patient ever been able to hold the head up without support?
Technical specs
CSV column name:
CD_PAT_HP_HEAD_NO_SUPP
Required:
true
Stable:
true
Options
| Label | Value |
| Never able to do so | 1 |
| Was able to do so, but not anymore | 2 |
| Is currently able to do so | 3 |
Did the patient ever lose and then regain this ability, again according to the patient or caregiver?
Technical specs
CSV column name:
CD_LOSE_REAN_HEAD_NO_SUPP
Only when:
Required:
true
Stable:
true
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
When did the patient gain this ability?
Help
If only month and year are known, enter 15/mm/yyyy; If only the year is known, enter 01/07/yyyy; If neither month or year is known, please estimate based on the patient's anamnesis (see guidebook).
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_GAIN_HEAD_NO_SUPP
Only when:
Required:
false
Stable:
true
When did the patient first gain this ability?
Help
If only month and year are known, enter 15/mm/yyyy; If only the year is known, enter 01/07/yyyy; If neither month or year is known, please estimate based on the patient's anamnesis (see guidebook).
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_FIRST_GAIN_HEAD_NO_SUPP
Only when:
Required:
false
Stable:
true
When did the patient lose this ability?
Help
If only month and year are known, enter 15/mm/yyyy; If only the year is known, enter 01/07/yyyy; If neither month or year is known, please estimate based on the patient's anamnesis (see guidebook).
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_LOSE_HEAD_NO_SUPP
Only when:
Required:
false
Stable:
true
When did the patient first lose this ability?
Help
If only month and year are known, enter 15/mm/yyyy; If only the year is known, enter 01/07/yyyy; If neither month or year is known, please estimate based on the patient's anamnesis (see guidebook).
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_FIRST_LOSE_HEAD_NO_SUPP
Only when:
Required:
false
Stable:
true
When did the patient regain this ability?
Help
If only month and year are known, enter 15/mm/yyyy; If only the year is known, enter 01/07/yyyy; If neither month or year is known, please estimate based on the patient's anamnesis (see guidebook).
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_REAN_HEAD_NO_SUPP
Only when:
Required:
false
Stable:
true
When did the patient finally lose this ability?
Help
If only month and year are known, enter 15/mm/yyyy; If only the year is known, enter 01/07/yyyy; If neither month or year is known, please estimate based on the patient's anamnesis (see guidebook).
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_FIN_LOSE_HEAD_NO_SUPP
Only when:
Required:
false
Stable:
true
According to your observations, is the individual currently able to roll onto side?
Technical specs
CSV column name:
CD_ROLL_SIDE
Required:
true
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
| Unknown | 99 |
According to the patient or caregiver, has the patient ever been able to roll onto side?
Technical specs
CSV column name:
CD_PAT_HP_ROLL_SIDE
Required:
true
Stable:
true
Options
| Label | Value |
| Never able to do so | 1 |
| Was able to do so, but not anymore | 2 |
| Is currently able to do so | 3 |
Did the patient ever lose and then regain this ability, again according to the patient or caregiver?
Technical specs
CSV column name:
CD_LOSE_REAN_ROLL_SIDE
Only when:
Required:
true
Stable:
true
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
When did the patient gain this ability?
Help
If only month and year are known, enter 15/mm/yyyy; If only the year is known, enter 01/07/yyyy; If neither month or year is known, please estimate based on the patient's anamnesis (see guidebook).
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_GAIN_ROLL_SIDE
Only when:
Required:
false
Stable:
true
When did the patient first gain this ability?
Help
If only month and year are known, enter 15/mm/yyyy; If only the year is known, enter 01/07/yyyy; If neither month or year is known, please estimate based on the patient's anamnesis (see guidebook).
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_FIRST_GAIN_ROLL_SIDE
Only when:
Required:
false
Stable:
true
When did the patient lose this ability?
Help
If only month and year are known, enter 15/mm/yyyy; If only the year is known, enter 01/07/yyyy; If neither month or year is known, please estimate based on the patient's anamnesis (see guidebook).
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_LOSE_ROLL_SIDE
Only when:
Required:
false
Stable:
true
When did the patient first lose this ability?
Help
If only month and year are known, enter 15/mm/yyyy; If only the year is known, enter 01/07/yyyy; If neither month or year is known, please estimate based on the patient's anamnesis (see guidebook).
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_FIRST_LOSE_ROLL_SIDE
Only when:
Required:
false
Stable:
true
When did the patient regain this ability?
Help
If only month and year are known, enter 15/mm/yyyy; If only the year is known, enter 01/07/yyyy; If neither month or year is known, please estimate based on the patient's anamnesis (see guidebook).
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_REAN_ROLL_SIDE
Only when:
Required:
false
Stable:
true
When did the patient finally lose this ability?
Help
If only month and year are known, enter 15/mm/yyyy; If only the year is known, enter 01/07/yyyy; If neither month or year is known, please estimate based on the patient's anamnesis (see guidebook).
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_FIN_LOSE_ROLL_SIDE
Only when:
Required:
false
Stable:
true
According to your observations, is the individual currently able to sit without support?
Technical specs
CSV column name:
CD_SIT_NO_SUPP
Required:
true
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
| Unknown | 99 |
Validation
- If best motor function achieved is equal to "neither" then sit without support should be "no" (error)
According to the patient or caregiver, has the patient ever been able to sit without support?
Technical specs
CSV column name:
CD_PAT_HP_SIT_NO_SUPP
Required:
true
Stable:
true
Options
| Label | Value |
| Never able to do so | 1 |
| Was able to do so, but not anymore | 2 |
| Is currently able to do so | 3 |
Did the patient ever lose and then regain this ability, again according to the patient or caregiver?
Technical specs
CSV column name:
CD_LOSE_REAN_SIT_NO_SUPP
Only when:
Required:
true
Stable:
true
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
When did the patient gain this ability?
Help
If only month and year are known, enter 15/mm/yyyy; If only the year is known, enter 01/07/yyyy; If neither month or year is known, please estimate based on the patient's anamnesis (see guidebook).
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_GAIN_SIT_NO_SUPP
Only when:
Required:
false
Stable:
true
When did the patient first gain this ability?
Help
If only month and year are known, enter 15/mm/yyyy; If only the year is known, enter 01/07/yyyy; If neither month or year is known, please estimate based on the patient's anamnesis (see guidebook).
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_FIRST_GAIN_SIT_NO_SUPP
Only when:
Required:
false
Stable:
true
When did the patient lose this ability?
Help
If only month and year are known, enter 15/mm/yyyy; If only the year is known, enter 01/07/yyyy; If neither month or year is known, please estimate based on the patient's anamnesis (see guidebook).
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_LOSE_SIT_NO_SUPP
Only when:
Required:
false
Stable:
true
When did the patient first lose this ability?
Help
If only month and year are known, enter 15/mm/yyyy; If only the year is known, enter 01/07/yyyy; If neither month or year is known, please estimate based on the patient's anamnesis (see guidebook).
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_FIRST_LOSE_SIT_NO_SUPP
Only when:
Required:
false
Stable:
true
When did the patient regain this ability?
Help
If only month and year are known, enter 15/mm/yyyy; If only the year is known, enter 01/07/yyyy; If neither month or year is known, please estimate based on the patient's anamnesis (see guidebook).
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_REAN_SIT_NO_SUPP
Only when:
Required:
false
Stable:
true
When did the patient finally lose this ability?
Help
If only month and year are known, enter 15/mm/yyyy; If only the year is known, enter 01/07/yyyy; If neither month or year is known, please estimate based on the patient's anamnesis (see guidebook).
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_FIN_LOSE_SIT_NO_SUPP
Only when:
Required:
false
Stable:
true
According to your observations, is the individual currently able to crawl on hands and knees?
Technical specs
CSV column name:
CD_CRAWL_HAND_KNEE
Required:
true
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
| Unknown | 99 |
According to the patient or caregiver, has the patient ever been able to crawl on hands and knees?
Technical specs
CSV column name:
CD_PAT_HP_CRAWL_HAND_KNEE
Required:
true
Stable:
true
Options
| Label | Value |
| Never able to do so | 1 |
| Was able to do so, but not anymore | 2 |
| Is currently able to do so | 3 |
Did the patient ever lose and then regain this ability, again according to the patient or caregiver?
Technical specs
CSV column name:
CD_LOSE_REAN_CRAWL_HAND_KNEE
Only when:
Required:
true
Stable:
true
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
When did the patient gain this ability?
Help
If only month and year are known, enter 15/mm/yyyy; If only the year is known, enter 01/07/yyyy; If neither month or year is known, please estimate based on the patient's anamnesis (see guidebook).
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_GAIN_CRAWL_HAND_KNEE
Only when:
Required:
false
Stable:
true
When did the patient first gain this ability?
Help
If only month and year are known, enter 15/mm/yyyy; If only the year is known, enter 01/07/yyyy; If neither month or year is known, please estimate based on the patient's anamnesis (see guidebook).
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_FIRST_GAIN_CRAWL_HAND_KNEE
Only when:
Required:
false
Stable:
true
When did the patient lose this ability?
Help
If only month and year are known, enter 15/mm/yyyy; If only the year is known, enter 01/07/yyyy; If neither month or year is known, please estimate based on the patient's anamnesis (see guidebook).
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_LOSE_CRAWL_HAND_KNEE
Only when:
Required:
false
Stable:
true
When did the patient first lose this ability?
Help
If only month and year are known, enter 15/mm/yyyy; If only the year is known, enter 01/07/yyyy; If neither month or year is known, please estimate based on the patient's anamnesis (see guidebook).
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_FIRST_LOSE_CRAWL_HAND_KNEE
Only when:
Required:
false
Stable:
true
When did the patient regain this ability?
Help
If only month and year are known, enter 15/mm/yyyy; If only the year is known, enter 01/07/yyyy; If neither month or year is known, please estimate based on the patient's anamnesis (see guidebook).
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_REAN_CRAWL_HAND_KNEE
Only when:
Required:
false
Stable:
true
When did the patient finally lose this ability?
Help
If only month and year are known, enter 15/mm/yyyy; If only the year is known, enter 01/07/yyyy; If neither month or year is known, please estimate based on the patient's anamnesis (see guidebook).
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_FIN_LOSE_CRAWL_HAND_KNEE
Only when:
Required:
false
Stable:
true
According to your observations, is the individual currently able to stand with assistance?
Technical specs
CSV column name:
CD_STAN_ASSTNC
Required:
true
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
| Unknown | 99 |
Validation
- If best motor function achieved is equal to "neither" then stand with assistance should be "no" (error)
- If stage of disease is equal to "ambulant" then stand with assistance should be "yes" (error)
According to the patient or caregiver, has the patient ever been able to stand with assistance?
Technical specs
CSV column name:
CD_PAT_HP_STAN_ASSTNC
Required:
true
Stable:
true
Options
| Label | Value |
| Never able to do so | 1 |
| Was able to do so, but not anymore | 2 |
| Is currently able to do so | 3 |
Did the patient ever lose and then regain this ability, again according to the patient or caregiver?
Technical specs
CSV column name:
CD_LOSE_REAN_STAN_ASSTNC
Only when:
Required:
true
Stable:
true
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
When did the patient gain this ability?
Help
If only month and year are known, enter 15/mm/yyyy; If only the year is known, enter 01/07/yyyy; If neither month or year is known, please estimate based on the patient's anamnesis (see guidebook).
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_GAIN_STAN_ASSTNC
Only when:
Required:
false
Stable:
true
When did the patient first gain this ability?
Help
If only month and year are known, enter 15/mm/yyyy; If only the year is known, enter 01/07/yyyy; If neither month or year is known, please estimate based on the patient's anamnesis (see guidebook).
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_FIRST_GAIN_STAN_ASSTNC
Only when:
Required:
false
Stable:
true
When did the patient lose this ability?
Help
If only month and year are known, enter 15/mm/yyyy; If only the year is known, enter 01/07/yyyy; If neither month or year is known, please estimate based on the patient's anamnesis (see guidebook).
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_LOSE_STAN_ASSTNC
Only when:
Required:
false
Stable:
true
When did the patient first lose this ability?
Help
If only month and year are known, enter 15/mm/yyyy; If only the year is known, enter 01/07/yyyy; If neither month or year is known, please estimate based on the patient's anamnesis (see guidebook).
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_FIRST_LOSE_STAN_ASSTNC
Only when:
Required:
false
Stable:
true
When did the patient regain this ability?
Help
If only month and year are known, enter 15/mm/yyyy; If only the year is known, enter 01/07/yyyy; If neither month or year is known, please estimate based on the patient's anamnesis (see guidebook).
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_REAN_STAN_ASSTNC
Only when:
Required:
false
Stable:
true
When did the patient finally lose this ability?
Help
If only month and year are known, enter 15/mm/yyyy; If only the year is known, enter 01/07/yyyy; If neither month or year is known, please estimate based on the patient's anamnesis (see guidebook).
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_FIN_LOSE_STAN_ASSTNC
Only when:
Required:
false
Stable:
true
According to your observations, is the individual currently able to stand alone (without assistance) ?
Technical specs
CSV column name:
CD_STAN_NO_ASSTNC
Required:
true
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
| Unknown | 99 |
Validation
- If best motor function achieved is equal to "neither" then stand without assistance should be "no" (error)
- If stage of disease is equal to "ambulant" then stand without assistance should be "yes" (error)
According to the patient or caregiver, has the patient ever been able to stand alone (without assistance) ?
Technical specs
CSV column name:
CD_PAT_HP_STAN_NO_ASSTNC
Required:
true
Stable:
true
Options
| Label | Value |
| Never able to do so | 1 |
| Was able to do so, but not anymore | 2 |
| Is currently able to do so | 3 |
Did the patient ever lose and then regain this ability, again according to the patient or caregiver?
Technical specs
CSV column name:
CD_LOSE_REAN_STAN_NO_ASSTNC
Only when:
Required:
true
Stable:
true
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
When did the patient gain this ability?
Help
If only month and year are known, enter 15/mm/yyyy; If only the year is known, enter 01/07/yyyy; If neither month or year is known, please estimate based on the patient's anamnesis (see guidebook).
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_GAIN_STAN_NO_ASSTNC
Only when:
Required:
false
Stable:
true
When did the patient first gain this ability?
Help
If only month and year are known, enter 15/mm/yyyy; If only the year is known, enter 01/07/yyyy; If neither month or year is known, please estimate based on the patient's anamnesis (see guidebook).
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_FIRST_GAIN_STAN_NO_ASSTNC
Only when:
Required:
false
Stable:
true
When did the patient lose this ability?
Help
If only month and year are known, enter 15/mm/yyyy; If only the year is known, enter 01/07/yyyy; If neither month or year is known, please estimate based on the patient's anamnesis (see guidebook).
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_LOSE_STAN_NO_ASSTNC
Only when:
Required:
false
Stable:
true
When did the patient first lose this ability?
Help
If only month and year are known, enter 15/mm/yyyy; If only the year is known, enter 01/07/yyyy; If neither month or year is known, please estimate based on the patient's anamnesis (see guidebook).
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_FIRST_LOSE_STAN_NO_ASSTNC
Only when:
Required:
false
Stable:
true
When did the patient regain this ability?
Help
If only month and year are known, enter 15/mm/yyyy; If only the year is known, enter 01/07/yyyy; If neither month or year is known, please estimate based on the patient's anamnesis (see guidebook).
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_REAN_STAN_NO_ASSTNC
Only when:
Required:
false
Stable:
true
When did the patient finally lose this ability?
Help
If only month and year are known, enter 15/mm/yyyy; If only the year is known, enter 01/07/yyyy; If neither month or year is known, please estimate based on the patient's anamnesis (see guidebook).
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_FIN_LOSE_STAN_NO_ASSTNC
Only when:
Required:
false
Stable:
true
According to your observations, is the individual currently able to walk with assistance?
Technical specs
CSV column name:
CD_WALK_ASSTNC
Required:
true
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
| Unknown | 99 |
Validation
- If best motor function achieved is equal to "neither" then walk with assistance should be "no" (error)
- If stage of disease is equal to "ambulant" then walk with assistance should be "yes" (error)
According to the patient or caregiver, has the patient ever been able to walk with assistance?
Technical specs
CSV column name:
CD_PAT_HP_WALK_ASSTNC
Required:
true
Stable:
true
Options
| Label | Value |
| Never able to do so | 1 |
| Was able to do so, but not anymore | 2 |
| Is currently able to do so | 3 |
Did the patient ever lose and then regain this ability, again according to the patient or caregiver?
Technical specs
CSV column name:
CD_LOSE_REAN_WALK_ASSTNC
Only when:
Required:
true
Stable:
true
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
When did the patient gain this ability?
Help
If only month and year are known, enter 15/mm/yyyy; If only the year is known, enter 01/07/yyyy; If neither month or year is known, please estimate based on the patient's anamnesis (see guidebook).
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_GAIN_WALK_ASSTNC
Only when:
Required:
false
Stable:
true
When did the patient first gain this ability?
Help
If only month and year are known, enter 15/mm/yyyy; If only the year is known, enter 01/07/yyyy; If neither month or year is known, please estimate based on the patient's anamnesis (see guidebook).
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_FIRST_GAIN_WALK_ASSTNC
Only when:
Required:
false
Stable:
true
When did the patient lose this ability?
Help
If only month and year are known, enter 15/mm/yyyy; If only the year is known, enter 01/07/yyyy; If neither month or year is known, please estimate based on the patient's anamnesis (see guidebook).
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_LOSE_WALK_ASSTNC
Only when:
Required:
false
Stable:
true
When did the patient first lose this ability?
Help
If only month and year are known, enter 15/mm/yyyy; If only the year is known, enter 01/07/yyyy; If neither month or year is known, please estimate based on the patient's anamnesis (see guidebook).
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_FIRST_LOSE_WALK_ASSTNC
Only when:
Required:
false
Stable:
true
When did the patient regain this ability?
Help
If only month and year are known, enter 15/mm/yyyy; If only the year is known, enter 01/07/yyyy; If neither month or year is known, please estimate based on the patient's anamnesis (see guidebook).
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_REAN_WALK_ASSTNC
Only when:
Required:
false
Stable:
true
When did the patient finally lose this ability?
Help
If only month and year are known, enter 15/mm/yyyy; If only the year is known, enter 01/07/yyyy; If neither month or year is known, please estimate based on the patient's anamnesis (see guidebook).
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_FIN_LOSE_WALK_ASSTNC
Only when:
Required:
false
Stable:
true
According to your observations, is the individual currently able to walk alone (without assistance) ?
Technical specs
CSV column name:
CD_WALK_NO_ASSTNC
Required:
true
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
| Unknown | 99 |
Validation
- If best motor function achieved is equal to "neither" then walk without assistance should be "no" (error)
- If best motor function achieved is equal to "sitting" then walk without assistance should be "no" (error)
- If stage of disease is equal to "symptomatic-not ambulant" then walk without assistance should be "no" (error)
- If stage of disease is equal to "loss of ambulation" then walk without assistance should be "no" (error)
According to the patient or caregiver, has the patient ever been able to walk alone (without assistance) ?
Technical specs
CSV column name:
CD_PAT_HP_WALK_NO_ASSTNC
Required:
true
Stable:
true
Options
| Label | Value |
| Never able to do so | 1 |
| Was able to do so, but not anymore | 2 |
| Is currently able to do so | 3 |
Did the patient ever lose and then regain this ability, again according to the patient or caregiver?
Technical specs
CSV column name:
CD_LOSE_REAN_WALK_NO_ASSTNC
Only when:
Required:
true
Stable:
true
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
When did the patient gain this ability?
Help
If only month and year are known, enter 15/mm/yyyy; If only the year is known, enter 01/07/yyyy; If neither month or year is known, please estimate based on the patient's anamnesis (see guidebook).
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_GAIN_WALK_NO_ASSTNC
Only when:
Required:
false
Stable:
true
When did the patient first gain this ability?
Help
If only month and year are known, enter 15/mm/yyyy; If only the year is known, enter 01/07/yyyy; If neither month or year is known, please estimate based on the patient's anamnesis (see guidebook).
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_FIRST_GAIN_WALK_NO_ASSTNC
Only when:
Required:
false
Stable:
true
When did the patient lose this ability?
Help
If only month and year are known, enter 15/mm/yyyy; If only the year is known, enter 01/07/yyyy; If neither month or year is known, please estimate based on the patient's anamnesis (see guidebook).
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_LOSE_WALK_NO_ASSTNC
Only when:
Required:
false
Stable:
true
When did the patient first lose this ability?
Help
If only month and year are known, enter 15/mm/yyyy; If only the year is known, enter 01/07/yyyy; If neither month or year is known, please estimate based on the patient's anamnesis (see guidebook).
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_FIRST_LOSE_WALK_NO_ASSTNC
Only when:
Required:
false
Stable:
true
When did the patient regain this ability?
Help
If only month and year are known, enter 15/mm/yyyy; If only the year is known, enter 01/07/yyyy; If neither month or year is known, please estimate based on the patient's anamnesis (see guidebook).
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_REAN_WALK_NO_ASSTNC
Only when:
Required:
false
Stable:
true
When did the patient finally lose this ability?
Help
If only month and year are known, enter 15/mm/yyyy; If only the year is known, enter 01/07/yyyy; If neither month or year is known, please estimate based on the patient's anamnesis (see guidebook).
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_FIN_LOSE_WALK_NO_ASSTNC
Only when:
Required:
false
Stable:
true
According to your observations, is the individual currently able to walk 10 metres unaided ?
Technical specs
CSV column name:
CD_WALK_10_MTR
Required:
true
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
| Unknown | 99 |
Validation
- If best motor function achieved is equal to "neither" then walk 10 metres without assistance should be "no" (error)
- If best motor function achieved is equal to "sitting" then walk 10 metres without assistance should be "no" (error)
- If stage of disease is equal to "symptomatic-not ambulant" then walk 10 metres without assistance should be "no" (error)
- If stage of disease is equal to "loss of ambulation" then walk 10 metres without assistance should be "no" (error)
According to the patient or caregiver, has the patient ever been able to walk 10 metres unaided?
Technical specs
CSV column name:
CD_PAT_HP_WALK_10_MTR
Required:
true
Stable:
true
Options
| Label | Value |
| Never able to do so | 1 |
| Was able to do so, but not anymore | 2 |
| Is currently able to do so | 3 |
Did the patient ever lose and then regain this ability, again according to the patient or caregiver?
Technical specs
CSV column name:
CD_LOSE_REAN_WALK_10_MTR
Only when:
Required:
true
Stable:
true
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
When did the patient gain this ability?
Help
If only month and year are known, enter 15/mm/yyyy; If only the year is known, enter 01/07/yyyy; If neither month or year is known, please estimate based on the patient's anamnesis (see guidebook).
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_GAIN_WALK_10_MTR
Only when:
Required:
false
Stable:
true
When did the patient first gain this ability?
Help
If only month and year are known, enter 15/mm/yyyy; If only the year is known, enter 01/07/yyyy; If neither month or year is known, please estimate based on the patient's anamnesis (see guidebook).
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_FIRST_GAIN_WALK_10_MTR
Only when:
Required:
false
Stable:
true
When did the patient lose this ability?
Help
If only month and year are known, enter 15/mm/yyyy; If only the year is known, enter 01/07/yyyy; If neither month or year is known, please estimate based on the patient's anamnesis (see guidebook).
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_LOSE_WALK_10_MTR
Only when:
Required:
false
Stable:
true
When did the patient first lose this ability?
Help
If only month and year are known, enter 15/mm/yyyy; If only the year is known, enter 01/07/yyyy; If neither month or year is known, please estimate based on the patient's anamnesis (see guidebook).
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_FIRST_LOSE_WALK_10_MTR
Only when:
Required:
false
Stable:
true
When did the patient regain this ability?
Help
If only month and year are known, enter 15/mm/yyyy; If only the year is known, enter 01/07/yyyy; If neither month or year is known, please estimate based on the patient's anamnesis (see guidebook).
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_REAN_WALK_10_MTR
Only when:
Required:
false
Stable:
true
When did the patient finally lose this ability?
Help
If only month and year are known, enter 15/mm/yyyy; If only the year is known, enter 01/07/yyyy; If neither month or year is known, please estimate based on the patient's anamnesis (see guidebook).
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_FIN_LOSE_WALK_10_MTR
Only when:
Required:
false
Stable:
true
According to your observations, is the individual currently able to climb stairs?
Technical specs
CSV column name:
CD_CLIMB_STAI
Required:
true
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
| Unknown | 99 |
Validation
- If best motor function achieved is equal to "neither" then climb stairs should be "no" (error)
- If best motor function achieved is equal to "sitting" then climb stairs should be "no" (error)
- If stage of disease is equal to "symptomatic-not ambulant" then climb stairs should be "no" (error)
- If stage of disease is equal to "loss of ambulation" then climb stairs should be "no" (error)
According to the patient or caregiver, has the patient ever been able to climb stairs?
Technical specs
CSV column name:
CD_PAT_HP_CLIMB_STAI
Required:
true
Stable:
true
Options
| Label | Value |
| Never able to do so | 1 |
| Was able to do so, but not anymore | 2 |
| Is currently able to do so | 3 |
Did the patient ever lose and then regain this ability, again according to the patient or caregiver?
Technical specs
CSV column name:
CD_LOSE_REAN_CLIMB_STAI
Only when:
Required:
true
Stable:
true
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
When did the patient gain this ability?
Help
If only month and year are known, enter 15/mm/yyyy; If only the year is known, enter 01/07/yyyy; If neither month or year is known, please estimate based on the patient's anamnesis (see guidebook).
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_GAIN_CLIMB_STAI
Only when:
Required:
false
Stable:
true
When did the patient first gain this ability?
Help
If only month and year are known, enter 15/mm/yyyy; If only the year is known, enter 01/07/yyyy; If neither month or year is known, please estimate based on the patient's anamnesis (see guidebook).
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_FIRST_GAIN_CLIMB_STAI
Only when:
Required:
false
Stable:
true
When did the patient lose this ability?
Help
If only month and year are known, enter 15/mm/yyyy; If only the year is known, enter 01/07/yyyy; If neither month or year is known, please estimate based on the patient's anamnesis (see guidebook).
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_LOSE_CLIMB_STAI
Only when:
Required:
false
Stable:
true
When did the patient first lose this ability?
Help
If only month and year are known, enter 15/mm/yyyy; If only the year is known, enter 01/07/yyyy; If neither month or year is known, please estimate based on the patient's anamnesis (see guidebook).
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_FIRST_LOSE_CLIMB_STAI
Only when:
Required:
false
Stable:
true
When did the patient regain this ability?
Help
If only month and year are known, enter 15/mm/yyyy; If only the year is known, enter 01/07/yyyy; If neither month or year is known, please estimate based on the patient's anamnesis (see guidebook).
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_REAN_CLIMB_STAI
Only when:
Required:
false
Stable:
true
When did the patient finally lose this ability?
Help
If only month and year are known, enter 15/mm/yyyy; If only the year is known, enter 01/07/yyyy; If neither month or year is known, please estimate based on the patient's anamnesis (see guidebook).
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_FIN_LOSE_CLIMB_STAI
Only when:
Required:
false
Stable:
true
According to your observations, is the individual currently able to achieve useful function of hands ?
Technical specs
CSV column name:
CD_FUNCN_HAND
Required:
true
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
| Unknown | 99 |
According to the patient or caregiver, has the patient ever been able to achieve useful function of hands ?
Technical specs
CSV column name:
CD_PAT_HP_FUNCN_HAND
Required:
true
Stable:
true
Options
| Label | Value |
| Never able to do so | 1 |
| Was able to do so, but not anymore | 2 |
| Is currently able to do so | 3 |
Did the patient ever lose and then regain this ability, again according to the patient or caregiver?
Technical specs
CSV column name:
CD_LOSE_REAN_FUNCN_HAND
Only when:
Required:
true
Stable:
true
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
When did the patient gain this ability?
Help
If only month and year are known, enter 15/mm/yyyy; If only the year is known, enter 01/07/yyyy; If neither month or year is known, please estimate based on the patient's anamnesis (see guidebook).
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_GAIN_FUNCN_HAND
Only when:
Required:
false
Stable:
true
When did the patient first gain this ability?
Help
If only month and year are known, enter 15/mm/yyyy; If only the year is known, enter 01/07/yyyy; If neither month or year is known, please estimate based on the patient's anamnesis (see guidebook).
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_FIRST_GAIN_FUNCN_HAND
Only when:
Required:
false
Stable:
true
When did the patient lose this ability?
Help
If only month and year are known, enter 15/mm/yyyy; If only the year is known, enter 01/07/yyyy; If neither month or year is known, please estimate based on the patient's anamnesis (see guidebook).
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_LOSE_FUNCN_HAND
Only when:
Required:
false
Stable:
true
When did the patient first lose this ability?
Help
If only month and year are known, enter 15/mm/yyyy; If only the year is known, enter 01/07/yyyy; If neither month or year is known, please estimate based on the patient's anamnesis (see guidebook).
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_FIRST_LOSE_FUNCN_HAND
Only when:
Required:
false
Stable:
true
When did the patient regain this ability?
Help
If only month and year are known, enter 15/mm/yyyy; If only the year is known, enter 01/07/yyyy; If neither month or year is known, please estimate based on the patient's anamnesis (see guidebook).
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_REAN_FUNCN_HAND
Only when:
Required:
false
Stable:
true
When did the patient finally lose this ability?
Help
If only month and year are known, enter 15/mm/yyyy; If only the year is known, enter 01/07/yyyy; If neither month or year is known, please estimate based on the patient's anamnesis (see guidebook).
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_FIN_LOSE_FUNCN_HAND
Only when:
Required:
false
Stable:
true
According to your observations, is the individual currently able to reach overhead in a sitting position?
Technical specs
CSV column name:
CD_REACHO_SITPOS
Required:
true
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
| Unknown | 99 |
According to the patient or caregiver, has the patient ever been able to reach overhead in a sitting position?
Technical specs
CSV column name:
CD_PAT_HP_REACHO_SITPOS
Required:
true
Stable:
true
Options
| Label | Value |
| Never able to do so | 1 |
| Was able to do so, but not anymore | 2 |
| Is currently able to do so | 3 |
Did the patient ever lose and then regain this ability, again according to the patient or caregiver?
Technical specs
CSV column name:
CD_LOSE_REAN_REACHO_SITPOS
Only when:
Required:
true
Stable:
true
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
When did the patient gain this ability?
Help
If only month and year are known, enter 15/mm/yyyy; If only the year is known, enter 01/07/yyyy; If neither month or year is known, please estimate based on the patient's anamnesis (see guidebook).
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_GAIN_REACHO_SITPOS
Only when:
Required:
false
Stable:
true
When did the patient first gain this ability?
Help
If only month and year are known, enter 15/mm/yyyy; If only the year is known, enter 01/07/yyyy; If neither month or year is known, please estimate based on the patient's anamnesis (see guidebook).
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_FIRST_GAIN_REACHO_SITPOS
Only when:
Required:
false
Stable:
true
When did the patient lose this ability?
Help
If only month and year are known, enter 15/mm/yyyy; If only the year is known, enter 01/07/yyyy; If neither month or year is known, please estimate based on the patient's anamnesis (see guidebook).
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_LOSE_REACHO_SITPOS
Only when:
Required:
false
Stable:
true
When did the patient first lose this ability?
Help
If only month and year are known, enter 15/mm/yyyy; If only the year is known, enter 01/07/yyyy; If neither month or year is known, please estimate based on the patient's anamnesis (see guidebook).
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_FIRST_LOSE_REACHO_SITPOS
Only when:
Required:
false
Stable:
true
When did the patient regain this ability?
Help
If only month and year are known, enter 15/mm/yyyy; If only the year is known, enter 01/07/yyyy; If neither month or year is known, please estimate based on the patient's anamnesis (see guidebook).
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_REAN_REACHO_SITPOS
Only when:
Required:
false
Stable:
true
When did the patient finally lose this ability?
Help
If only month and year are known, enter 15/mm/yyyy; If only the year is known, enter 01/07/yyyy; If neither month or year is known, please estimate based on the patient's anamnesis (see guidebook).
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_FIN_LOSE_REACHO_SITPOS
Only when:
Required:
false
Stable:
true
According to your observations, is the individual currently able to raise hands to mouth in a sitting position?
Technical specs
CSV column name:
CD_HAND_MOUTH
Required:
true
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
| Unknown | 99 |
According to the patient or caregiver, has the patient ever been able to raise hands to mouth in a sitting position?
Technical specs
CSV column name:
CD_PAT_HP_HAND_MOUTH
Required:
true
Stable:
true
Options
| Label | Value |
| Never able to do so | 1 |
| Was able to do so, but not anymore | 2 |
| Is currently able to do so | 3 |
Did the patient ever lose and then regain this ability, again according to the patient or caregiver?
Technical specs
CSV column name:
CD_LOSE_REAN_HAND_MOUTH
Only when:
Required:
true
Stable:
true
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
When did the patient gain this ability?
Help
If only month and year are known, enter 15/mm/yyyy; If only the year is known, enter 01/07/yyyy; If neither month or year is known, please estimate based on the patient's anamnesis (see guidebook).
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_GAIN_HAND_MOUTH
Only when:
Required:
false
Stable:
true
When did the patient first gain this ability?
Help
If only month and year are known, enter 15/mm/yyyy; If only the year is known, enter 01/07/yyyy; If neither month or year is known, please estimate based on the patient's anamnesis (see guidebook).
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_FIRST_GAIN_HAND_MOUTH
Only when:
Required:
false
Stable:
true
When did the patient lose this ability?
Help
If only month and year are known, enter 15/mm/yyyy; If only the year is known, enter 01/07/yyyy; If neither month or year is known, please estimate based on the patient's anamnesis (see guidebook).
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_LOSE_HAND_MOUTH
Only when:
Required:
false
Stable:
true
When did the patient first lose this ability?
Help
If only month and year are known, enter 15/mm/yyyy; If only the year is known, enter 01/07/yyyy; If neither month or year is known, please estimate based on the patient's anamnesis (see guidebook).
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_FIRST_LOSE_HAND_MOUTH
Only when:
Required:
false
Stable:
true
When did the patient regain this ability?
Help
If only month and year are known, enter 15/mm/yyyy; If only the year is known, enter 01/07/yyyy; If neither month or year is known, please estimate based on the patient's anamnesis (see guidebook).
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_REAN_HAND_MOUTH
Only when:
Required:
false
Stable:
true
When did the patient finally lose this ability?
Help
If only month and year are known, enter 15/mm/yyyy; If only the year is known, enter 01/07/yyyy; If neither month or year is known, please estimate based on the patient's anamnesis (see guidebook).
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_FIN_LOSE_HAND_MOUTH
Only when:
Required:
false
Stable:
true
10 Wheelchair use
Section help
For patients ≥ 2 years old
Has the patient ever used a wheelchair?
Technical specs
CSV column name:
CD_WHLCHR_USE_EVR
Only when:
Required:
true
Stable:
true
Options
| Label | Value |
| Currently | 3 |
| Previously | 4 |
| Never | 1 |
| Unknown | 99 |
Validation
- If stage of disease is equal to "loss of ambulation" then use of wheelchair cannot be "never" or "previously" (error)
- Please complete the 'Wheelchair' use information (error)
Wheelchair usage episode
This is a container for multiple answers. See the reference documentation for more details. Below you can find the information about the fields of the container
Help
Please enter here all episodes where the patient used the wheelchair with a same frequency
Element conditions
| Message | Expression |
| Start date wheelchair cannot be before date of birth | typeof $.DT_WHLCHR_USE_START === 'string' && typeof $$.document.target.value.patient_id.date_of_birth === 'string'?$.DT_WHLCHR_USE_START >= $$.document.target.value.patient_id.date_of_birth:true |
| Start date wheelchair cannot be in the future | typeof $.DT_WHLCHR_USE_START === 'string'?new Date($.DT_WHLCHR_USE_START) |
| Start date wheelchair cannot be after date of death | typeof $.DT_WHLCHR_USE_START === 'string' && typeof $$.document.target.value.DT_DEATH === 'string'?$$.document.target.value.DT_DEATH >= $.DT_WHLCHR_USE_START:true |
| Stop date wheelchair cannot be before date of birth | typeof $.DT_WHLCHR_USE_STP === 'string' && typeof $$.document.target.value.patient_id.date_of_birth === 'string'?$.DT_WHLCHR_USE_STP >= $$.document.target.value.patient_id.date_of_birth:true |
| Stop date wheelchair cannot be after date of death | typeof $.DT_WHLCHR_USE_STP === 'string' && typeof $$.document.target.value.DT_DEATH === 'string'?$$.document.target.value.DT_DEATH >= $.DT_WHLCHR_USE_STP:true |
| Stop date wheelchair cannot be in the future | typeof $.DT_WHLCHR_USE_STP === 'string'?new Date($.DT_WHLCHR_USE_STP) |
| Start date wheelchair cannot be after stop date wheelchair | typeof $.DT_WHLCHR_USE_START === 'string' && typeof $.DT_WHLCHR_USE_STP === 'string'?$.DT_WHLCHR_USE_STP >= $.DT_WHLCHR_USE_START:true |
List items
Section help
Please enter here all episodes where the patient used the wheelchair with a same frequency
Start date wheelchair
Help
Guidebook: If you know the exact date, enter dd/mm/yyyy ; If only month and year are known, enter 15/mm/yyyy ; If only the year is known (i.e., use of wheelchair started in yyyy), enter 01/07/yyyy ; If a duration is known (i.e., use of wheelchair started X years ago), enter 01/07/current year – X ; If only an age is known (i.e., use of wheelchair started when I was X years old), enter birthday/birthmonth/birthyear + X.
Technical specs
Format:
DD/MM/YYYY
CSV column name:
TX_TTL_WHLCHR_USE|0|DT_WHLCHR_USE_START
Required:
true
Has the patient been continuously using the wheelchair?
Technical specs
CSV column name:
TX_TTL_WHLCHR_USE|0|CD_WHLCHR_USE_CONTLY
Required:
true
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
| Unknown | 99 |
Stop date wheelchair
Help
Guidebook: If you know the exact date, enter dd/mm/yyyy ; If only month and year are known, enter 15/mm/yyyy ; If only the year is known (i.e., use of wheelchair stopped in yyyy), enter 01/07/yyyy ; If a duration is known (i.e., use of wheelchair stopped X years ago), enter 01/07/current year – X ; If only an age is known (i.e., use of wheelchair stopped when I was X years old), enter birthday/birthmonth/birthyear + X.
Technical specs
Format:
DD/MM/YYYY
CSV column name:
TX_TTL_WHLCHR_USE|0|DT_WHLCHR_USE_STP
Only when:
Required:
true
Frequency of wheelchair usage
Technical specs
CSV column name:
TX_TTL_WHLCHR_USE|0|CD_FREQ_WHLCHR_USE
Required:
true
Options
| Label | Value |
| Part-time | 1 |
| Full-time | 2 |
11 Motor measures
Was a validated motor measure taken for this patient this year?
Help
TREAT-NMD recommends to collect a minimum of 1 validated motor measure for each individual.
Technical specs
CSV column name:
CD_VALDT_MOTOR_MS
Required:
true
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
Mapping of the clinical building blocks (indicative only)
Concept:
be.en.hd.Mobility
Data element:
Comment
Reason why a motor measure was not taken at the visit
Technical specs
CSV column name:
CD_MOTOR_MS_REAS
Only when:
Required:
true
Options
| Label | Value |
| Inability to attain start position or disease progression | 1 |
| Injury or illness | 2 |
| Inability to follow or understand directions | 3 |
| Refusal, attention or behaviour issue | 4 |
| Fatigue | 8 |
| Pain or muscle cramp | 9 |
| Equipment/software issue | 6 |
| Other | 7 |
Nested option fields
- When 2 Is selected:text
Please specify
Technical specs
CSV column name:
CD_MOTOR_MS_REAS|TX_MOTOR_MS_REAS_INJRY
Required:
true
Please specify the other reason
Technical specs
CSV column name:
TX_MOTOR_MS_OTH_REAS
Only when:
Required:
true
Motor measures SMA
Help
When only one measure can be entered, please enter the value for the dominant hand
Technical specs
CSV column name:
CD_MOTOR_MS
Only when:
Required:
true
Options
| Label | Value |
| 6MWT | FL_MOTOR_6MWT |
| 10MWT | FL_MOTOR_10MWT |
| 9HPT | FL_MOTOR_9HPT |
| ACTIVE | FL_MOTOR_ACTIVE |
| AIMS | FL_MOTOR_AIMS |
| BBT | FL_MOTOR_BBT |
| Brooke | FL_MOTOR_BROOKE |
| BSID-III | FL_MOTOR_BSID3 |
| CHOP-INTEND | FL_MOTOR_CHOPINT |
| EK2 | FL_MOTOR_EK2 |
| ES9HPT | FL_MOTOR_ES9HPT |
| ESBBT | FL_MOTOR_ESBBT |
| HFMS | FL_MOTOR_HFMS |
| HFMS-E | FL_MOTOR_HFMSE |
| HINE Section 2 | FL_MOTOR_HINE2 |
| MFM | FL_MOTOR_MFM |
| r9HPT | FL_MOTOR_R9HPT |
| Revised Brooke | FL_MOTOR_REV_BROOKE |
| RHS | FL_MOTOR_RHS |
| RULM | FL_MOTOR_RULM |
| TIMPSI | FL_MOTOR_TIMPSI |
| TUG | FL_MOTOR_TUG |
| Vignos | FL_MOTOR_VIGNOS |
| WHO | FL_MOTOR_WHO |
Validation
- Please complete the 6MWT information (error)
- Please complete the '10MWT' information (error)
- Please complete the '9HPT' information (error)
- Please complete the 'ACTIVE' information (error)
- Please complete the 'AIMS' information (error)
- Please complete the 'BROOKE' information (error)
- Please complete the 'BSID-III' information (error)
- Please complete the 'CHOP-INTEND' information (error)
- Please complete the 'EK2' information (error)
- Please complete the 'HFMS' information (error)
- Please complete the 'HFMS-E' information (error)
- Please complete the 'HINE Section 2' information (error)
- Please complete the 'MFM' information (error)
- Please complete the 'r9HPT' information (error)
- Please complete the 'Revised Brooke' information (error)
- Please complete the 'RULM' information (error)
- Please complete the 'TIMPSI' information (error)
- Please complete the 'TUG' information (error)
- Please complete the 'VIGNOS' information (error)
- Please complete the 'WHO' information (error)
6MWT
This is a container for multiple answers. See the reference documentation for more details. Below you can find the information about the fields of the container
Element conditions
| Message | Expression |
| The 6MWT score must be an integer | typeof $.MS_MOTOR_MS_6MWT === 'number'?$.MS_MOTOR_MS_6MWT *1% 1===0:true |
| 6MWT date cannot be before date of birth | typeof $.DT_MOTOR_MS_6MWT === 'string' && typeof $$.document.target.value.patient_id.date_of_birth === 'string'?$.DT_MOTOR_MS_6MWT >= $$.document.target.value.patient_id.date_of_birth:true |
| 6MWT date cannot be after date of death | typeof $.DT_MOTOR_MS_6MWT === 'string' && typeof $$.document.target.value.DT_DEATH === 'string'?$$.document.target.value.DT_DEATH >= $.DT_MOTOR_MS_6MWT:true |
| 6MWT date cannot be in the future | typeof $.DT_MOTOR_MS_6MWT === 'string'?new Date($.DT_MOTOR_MS_6MWT) |
List items
6MWT score
Technical specs
CSV column name:
TX_TTL_6MWT|0|MS_MOTOR_MS_6MWT
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
Measurement-v1.0
Data element:
ResultValue
6MWT date
Technical specs
Format:
DD/MM/YYYY
CSV column name:
TX_TTL_6MWT|0|DT_MOTOR_MS_6MWT
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
Measurement-v1.0
Data element:
MeasurementDateStartTime
10MWT
This is a container for multiple answers. See the reference documentation for more details. Below you can find the information about the fields of the container
Element conditions
| Message | Expression |
| The 10MWT score cannot contain more than 1 decimal | typeof $.MS_MOTOR_MS_10MWT === 'number'?$.MS_MOTOR_MS_10MWT*10%1===0:true |
| 10MWT date cannot be before date of birth | typeof $.DT_MOTOR_MS_10MWT === 'string' && typeof $$.document.target.value.patient_id.date_of_birth === 'string'?$.DT_MOTOR_MS_10MWT >= $$.document.target.value.patient_id.date_of_birth:true |
| 10MWT date cannot be after date of death | typeof $.DT_MOTOR_MS_10MWT === 'string' && typeof $$.document.target.value.DT_DEATH === 'string'?$$.document.target.value.DT_DEATH >= $.DT_MOTOR_MS_10MWT:true |
| 10MWT date cannot be in the future | typeof $.DT_MOTOR_MS_10MWT === 'string'?new Date($.DT_MOTOR_MS_10MWT) |
List items
10MWT score
Technical specs
CSV column name:
TX_TTL_10MWT|0|MS_MOTOR_MS_10MWT
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
Measurement-v1.0
Data element:
ResultValue
10MWT date
Technical specs
Format:
DD/MM/YYYY
CSV column name:
TX_TTL_10MWT|0|DT_MOTOR_MS_10MWT
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
Measurement-v1.0
Data element:
MeasurementDateStartTime
9HPT
This is a container for multiple answers. See the reference documentation for more details. Below you can find the information about the fields of the container
Help
To enter a score for each hand, please create one item per hand
Element conditions
| Message | Expression |
| The 9HPT score cannot contain more than 1 decimal | typeof $.MS_MOTOR_MS_9HPT === 'number'?$.MS_MOTOR_MS_9HPT*10%1===0:true |
List items
Section help
To enter a score for each hand, please create one item per hand
9HPT hand
Technical specs
CSV column name:
TX_TTL_9HPT|0|CD_MOTOR_MS_9HPT_HND
Required:
true
Options
| Label | Value |
| left | 1 |
| right | 2 |
9HPT score
Technical specs
CSV column name:
TX_TTL_9HPT|0|MS_MOTOR_MS_9HPT
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
Measurement-v1.0
Data element:
ResultValue
9HPT date
Technical specs
Format:
DD/MM/YYYY
CSV column name:
TX_TTL_9HPT|0|DT_MOTOR_MS_9HPT
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
Measurement-v1.0
Data element:
MeasurementDateStartTime
ACTIVE
This is a container for multiple answers. See the reference documentation for more details. Below you can find the information about the fields of the container
Element conditions
| Message | Expression |
| ACTIVE score must be an integer | typeof $.MS_MOTOR_MS_ACT === 'number'?$.MS_MOTOR_MS_ACT *1% 1===0:true |
List items
ACTIVE score
Technical specs
CSV column name:
TX_TTL_ACT|0|MS_MOTOR_MS_ACT
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
Measurement-v1.0
Data element:
ResultValue
ACTIVE date
Technical specs
Format:
DD/MM/YYYY
CSV column name:
TX_TTL_ACT|0|DT_MOTOR_MS_ACT
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
Measurement-v1.0
Data element:
MeasurementDateStartTime
AIMS
This is a container for multiple answers. See the reference documentation for more details. Below you can find the information about the fields of the container
Element conditions
| Message | Expression |
| AIMS score must be an integer | typeof $.MS_MOTOR_MS_AIMS === 'number'?$.MS_MOTOR_MS_AIMS *1% 1===0:true |
List items
AIMS score
Technical specs
CSV column name:
TX_TTL_AIMS|0|MS_MOTOR_MS_AIMS
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
Measurement-v1.0
Data element:
ResultValue
AIMS date
Technical specs
Format:
DD/MM/YYYY
CSV column name:
TX_TTL_AIMS|0|DT_MOTOR_MS_AIMS
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
Measurement-v1.0
Data element:
MeasurementDateStartTime
BBT
This is a container for multiple answers. See the reference documentation for more details. Below you can find the information about the fields of the container
Help
To enter a score for each hand, please create one item per hand
Element conditions
| Message | Expression |
| BBT score must be an integer | typeof $.MS_MOTOR_MS_BBT === 'number'?$.MS_MOTOR_MS_BBT *1% 1===0:true |
List items
Section help
To enter a score for each hand, please create one item per hand
BBT hand
Technical specs
CSV column name:
TX_TTL_BBT|0|CD_MOTOR_MS_BBT_HND
Required:
true
Options
| Label | Value |
| left | 1 |
| right | 2 |
BBT score
Technical specs
CSV column name:
TX_TTL_BBT|0|MS_MOTOR_MS_BBT
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
Measurement-v1.0
Data element:
ResultValue
BBT date
Technical specs
Format:
DD/MM/YYYY
CSV column name:
TX_TTL_BBT|0|DT_MOTOR_MS_BBT
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
Measurement-v1.0
Data element:
MeasurementDateStartTime
Brooke
This is a container for multiple answers. See the reference documentation for more details. Below you can find the information about the fields of the container
Element conditions
| Message | Expression |
| The Brooke date cannot be before date of birth | typeof $.DT_MOTOR_MS_BROOKE === 'string' && typeof $$.document.target.value.patient_id.date_of_birth === 'string'?$.DT_MOTOR_MS_BROOKE >= $$.document.target.value.patient_id.date_of_birth:true |
| The Brooke date cannot be after date of death | typeof $.DT_MOTOR_MS_BROOKE === 'string' && typeof $$.document.target.value.DT_DEATH === 'string'?$$.document.target.value.DT_DEATH >= $.DT_MOTOR_MS_BROOKE:true |
| The Brooke date cannot be in the future | typeof $.DT_MOTOR_MS_BROOKE === 'string'?new Date($.DT_MOTOR_MS_BROOKE) |
| Brooke score must be an integer | typeof $.MS_MOTOR_MS_BROOKE === 'number'?$.MS_MOTOR_MS_BROOKE *1% 1===0:true |
List items
Brooke score
Technical specs
CSV column name:
TX_TTL_BROOKE|0|MS_MOTOR_MS_BROOKE
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
Measurement-v1.0
Data element:
MeasurementValue
Brooke date
Technical specs
Format:
DD/MM/YYYY
CSV column name:
TX_TTL_BROOKE|0|DT_MOTOR_MS_BROOKE
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
Measurement-v1.0
Data element:
MeasurementDateStartTime
BSID-III
This is a container for multiple answers. See the reference documentation for more details. Below you can find the information about the fields of the container
Element conditions
| Message | Expression |
| The BSID-III composite motor score must be an integer | typeof $.MS_MOTOR_MS_BSID3 === 'number'?$.MS_MOTOR_MS_BSID3 *1% 1===0:true |
| The BSID-III composite motor percentile score must be an integer | typeof $.MS_MOTOR_MS_BSID3_PCTL === 'number'?$.MS_MOTOR_MS_BSID3_PCTL *1% 1===0:true |
List items
BSID-III composite motor score
Technical specs
CSV column name:
TX_TTL_BSID3|0|MS_MOTOR_MS_BSID3
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
Measurement-v1.0
Data element:
ResultValue
BSID-III composite motor percentile score
Technical specs
CSV column name:
TX_TTL_BSID3|0|MS_MOTOR_MS_BSID3_PCTL
Required:
false
Mapping of the clinical building blocks (indicative only)
Concept:
Measurement-v1.0
Data element:
ResultValue
BSID-III date
Technical specs
Format:
DD/MM/YYYY
CSV column name:
TX_TTL_BSID3|0|DT_MOTOR_MS_BSID3
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
Measurement-v1.0
Data element:
MeasurementDateStartTime
CHOP-INTEND
This is a container for multiple answers. See the reference documentation for more details. Below you can find the information about the fields of the container
Element conditions
| Message | Expression |
| The CHOP-INTEND date cannot be before date of birth | typeof $.DT_MOTOR_MS_CHOPINT === 'string' && typeof $$.document.target.value.patient_id.date_of_birth === 'string'?$.DT_MOTOR_MS_CHOPINT >= $$.document.target.value.patient_id.date_of_birth:true |
| The CHOP-INTEND date cannot be after date of death | typeof $.DT_MOTOR_MS_CHOPINT === 'string' && typeof $$.document.target.value.DT_DEATH === 'string'?$$.document.target.value.DT_DEATH >= $.DT_MOTOR_MS_CHOPINT:true |
| The CHOP-INTEND date cannot be in the future | typeof $.DT_MOTOR_MS_CHOPINT === 'string'?new Date($.DT_MOTOR_MS_CHOPINT) |
| The CHOP-INTEND score must be an integer | typeof $.MS_MOTOR_MS_CHOPINT === 'number'?$.MS_MOTOR_MS_CHOPINT *1% 1===0:true |
List items
CHOP-INTEND score
Technical specs
CSV column name:
TX_TTL_CHOPINT|0|MS_MOTOR_MS_CHOPINT
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
Measurement-v1.0
Data element:
MeasurementValue
CHOP-INTEND date
Technical specs
Format:
DD/MM/YYYY
CSV column name:
TX_TTL_CHOPINT|0|DT_MOTOR_MS_CHOPINT
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
Measurement-v1.0
Data element:
MeasurementDateStartTime
EK2
This is a container for multiple answers. See the reference documentation for more details. Below you can find the information about the fields of the container
Element conditions
| Message | Expression |
| The EK2 date cannot be before date of birth | typeof $.DT_MOTOR_MS_EK2 === 'string' && typeof $$.document.target.value.patient_id.date_of_birth === 'string'?$.DT_MOTOR_MS_EK2>= $$.document.target.value.patient_id.date_of_birth:true |
| The EK2 date cannot be after date of death | typeof $.DT_MOTOR_MS_EK2 === 'string' && typeof $$.document.target.value.DT_DEATH === 'string'?$$.document.target.value.DT_DEATH >= $.DT_MOTOR_MS_EK2:true |
| The EK2 date cannot be in the future | typeof $.DT_MOTOR_MS_EK2 === 'string'?new Date($.DT_MOTOR_MS_EK2) |
| The EK2 score must be an integer | typeof $.MS_MOTOR_MS_EK2 === 'number'?$.MS_MOTOR_MS_EK2 *1% 1===0:true |
List items
EK2 score
Technical specs
CSV column name:
TX_TTL_EK|0|MS_MOTOR_MS_EK2
Required:
true
EK2 date
Technical specs
Format:
DD/MM/YYYY
CSV column name:
TX_TTL_EK|0|DT_MOTOR_MS_EK2
Required:
true
ES9HPT
This is a container for multiple answers. See the reference documentation for more details. Below you can find the information about the fields of the container
Help
To enter a score for each hand, please create one item per hand
Element conditions
| Message | Expression |
| The ES9HPT score cannot contain more than 1 decimal | typeof $.MS_MOTOR_MS_ES9HPT === 'number'?$.MS_MOTOR_MS_ES9HPT*10%1===0:true |
List items
Section help
To enter a score for each hand, please create one item per hand
ES9HPT hand
Technical specs
CSV column name:
TX_TTL_ES9HPT|0|CD_MOTOR_MS_ES9HPT_HND
Required:
true
Options
| Label | Value |
| left | 1 |
| right | 2 |
ES9HPT score
Technical specs
CSV column name:
TX_TTL_ES9HPT|0|MS_MOTOR_MS_ES9HPT
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
Measurement-v1.0
Data element:
ResultValue
ES9HPT date
Technical specs
Format:
DD/MM/YYYY
CSV column name:
TX_TTL_ES9HPT|0|DT_MOTOR_MS_ES9HPT
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
Measurement-v1.0
Data element:
MeasurementDateStartTime
ESBBT
This is a container for multiple answers. See the reference documentation for more details. Below you can find the information about the fields of the container
Help
To enter a score for each hand, please create one item per hand
Element conditions
| Message | Expression |
| The ESBBT score must be an integer | typeof $.MS_MOTOR_MS_ESBBT === 'number'?$.MS_MOTOR_MS_ESBBT *1% 1===0:true |
List items
Section help
To enter a score for each hand, please create one item per hand
ESBBT hand
Technical specs
CSV column name:
TX_TTL_ESBBT|0|CD_MOTOR_MS_ESBBT_HND
Required:
true
Options
| Label | Value |
| left | 1 |
| right | 2 |
ESBBT score
Technical specs
CSV column name:
TX_TTL_ESBBT|0|MS_MOTOR_MS_ESBBT
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
Measurement-v1.0
Data element:
ResultValue
ESBBT date
Technical specs
Format:
DD/MM/YYYY
CSV column name:
TX_TTL_ESBBT|0|DT_MOTOR_MS_ESBBT
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
Measurement-v1.0
Data element:
MeasurementDateStartTime
HFMS
This is a container for multiple answers. See the reference documentation for more details. Below you can find the information about the fields of the container
Element conditions
| Message | Expression |
| The HFMS date cannot be before date of birth | typeof $.DT_MOTOR_MS_HFMS === 'string' && typeof $$.document.target.value.patient_id.date_of_birth === 'string'?$.DT_MOTOR_MS_HFMS >= $$.document.target.value.patient_id.date_of_birth:true |
| The HFMS date cannot be after date of death | typeof $.DT_MOTOR_MS_HFMS=== 'string' && typeof $$.document.target.value.DT_DEATH === 'string'?$$.document.target.value.DT_DEATH >= $.DT_MOTOR_MS_HFMS:true |
| The HFMS date cannot be in the future | typeof $.DT_MOTOR_MS_HFMS === 'string'?new Date($.DT_MOTOR_MS_HFMS) |
| The HFMS score must be an integer | typeof $.MS_MOTOR_MS_HFMS === 'number'?$.MS_MOTOR_MS_HFMS *1% 1===0:true |
List items
HFMS score
Technical specs
CSV column name:
TX_TTL_HFMS|0|MS_MOTOR_MS_HFMS
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
Measurement-v1.0
Data element:
MeasurementValue
HFMS date
Technical specs
Format:
DD/MM/YYYY
CSV column name:
TX_TTL_HFMS|0|DT_MOTOR_MS_HFMS
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
Measurement-v1.0
Data element:
MeasurementDateStartTime
HFMS-E
This is a container for multiple answers. See the reference documentation for more details. Below you can find the information about the fields of the container
Element conditions
| Message | Expression |
| The HFMS-E date cannot be before date of birth | typeof $.DT_MOTOR_MS_HFMSE === 'string' && typeof $$.document.target.value.patient_id.date_of_birth === 'string'?$.DT_MOTOR_MS_HFMSE >= $$.document.target.value.patient_id.date_of_birth:true |
| The HFMS-E date cannot be after date of death | typeof $.DT_MOTOR_MS_HFMSE === 'string' && typeof $$.document.target.value.DT_DEATH === 'string'?$$.document.target.value.DT_DEATH >= $.DT_MOTOR_MS_HFMSE:true |
| The HFMS-E date cannot be in the future | typeof $.DT_MOTOR_MS_HFMSE === 'string'?new Date($.DT_MOTOR_MS_HFMSE) |
| The HFMS-E score must be an integer | typeof $.MS_MOTOR_MS_HFMSE === 'number'?$.MS_MOTOR_MS_HFMSE *1% 1===0:true |
List items
HFMS-E score
Technical specs
CSV column name:
TX_TTL_HFMSE|0|MS_MOTOR_MS_HFMSE
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
Measurement-v1.0
Data element:
MeasurementValue
HFMS-E date
Technical specs
Format:
DD/MM/YYYY
CSV column name:
TX_TTL_HFMSE|0|DT_MOTOR_MS_HFMSE
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
Measurement-v1.0
Data element:
MeasurementDateStartTime
HINE Section 2
This is a container for multiple answers. See the reference documentation for more details. Below you can find the information about the fields of the container
Element conditions
| Message | Expression |
| The HINE Section 2 score must be an integer | typeof $.MS_MOTOR_MS_HINE2 === 'number'?$.MS_MOTOR_MS_HINE2 *1% 1===0:true |
List items
HINE Section 2 score
Technical specs
CSV column name:
TX_TTL_HINE2|0|MS_MOTOR_MS_HINE2
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
Measurement-v1.0
Data element:
MeasurementValue
HINE Section 2 date
Technical specs
Format:
DD/MM/YYYY
CSV column name:
TX_TTL_HINE2|0|DT_MOTOR_MS_HINE2
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
Measurement-v1.0
Data element:
MeasurementDateStartTime
MFM
This is a container for multiple answers. See the reference documentation for more details. Below you can find the information about the fields of the container
Element conditions
| Message | Expression |
| The MFM date cannot be before date of birth | typeof $.DT_MOTOR_MS_MFM === 'string' && typeof $$.document.target.value.patient_id.date_of_birth === 'string'?$.DT_MOTOR_MS_MFM >= $$.document.target.value.patient_id.date_of_birth:true |
| The MFM date cannot be after date of death | typeof $.DT_MOTOR_MS_MFM === 'string' && typeof $$.document.target.value.DT_DEATH === 'string'?$$.document.target.value.DT_DEATH >= $.DT_MOTOR_MS_MFM:true |
| The MFM date cannot be in the future | typeof $.DT_MOTOR_MS_MFM === 'string'?new Date($.DT_MOTOR_MS_MFM) |
| The MFM score must be an integer | typeof $.MS_MOTOR_MS_MFM === 'number'?$.MS_MOTOR_MS_MFM *1% 1===0:true |
List items
MFM test type
Technical specs
CSV column name:
TX_TTL_MFM|0|CD_MOTOR_MFM_TPE
Required:
true
Options
| Label | Value |
| MFM-20 | 1 |
| MFM-32 | 2 |
Mapping of the clinical building blocks (indicative only)
Concept:
Measurement-v1.0
Data element:
ResultValue
MFM test subdomain or global score
Technical specs
CSV column name:
TX_TTL_MFM|0|CD_MOTOR_MFM_SCORE
Required:
true
Options
| Label | Value |
| Global | 1 |
| D1 | 2 |
| D2 | 3 |
| D3 | 4 |
MFM score
Technical specs
CSV column name:
TX_TTL_MFM|0|MS_MOTOR_MS_MFM
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
Measurement-v1.0
Data element:
ResultValue
MFM date
Technical specs
Format:
DD/MM/YYYY
CSV column name:
TX_TTL_MFM|0|DT_MOTOR_MS_MFM
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
Measurement-v1.0
Data element:
MeasurementDateStartTime
r9HPT
This is a container for multiple answers. See the reference documentation for more details. Below you can find the information about the fields of the container
Help
To enter a score for each hand, please create one item per hand
Element conditions
| Message | Expression |
| The r9HPT score cannot contain more than 1 decimal | typeof $.MS_MOTOR_MS_R9HPT === 'number'?$.MS_MOTOR_MS_R9HPT*10%1===0:true |
List items
Section help
To enter a score for each hand, please create one item per hand
r9HPT hand
Technical specs
CSV column name:
TX_TTL_R9HPT|0|CD_MOTOR_MS_R9HPT_HAND
Required:
true
Options
| Label | Value |
| left | 1 |
| right | 2 |
r9HPT score
Technical specs
CSV column name:
TX_TTL_R9HPT|0|MS_MOTOR_MS_R9HPT
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
Measurement-v1.0
Data element:
ResultValue
r9HPT date
Technical specs
Format:
DD/MM/YYYY
CSV column name:
TX_TTL_R9HPT|0|DT_MOTOR_MS_R9HPT
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
Measurement-v1.0
Data element:
MeasurementDateStartTime
Revised Brooke
This is a container for multiple answers. See the reference documentation for more details. Below you can find the information about the fields of the container
Help
To enter a score for each side, please create one item per side
Element conditions
| Message | Expression |
| The revised Brooke date cannot be before date of birth | typeof $.DT_MOTOR_MS_REV_BROOKE === 'string' && typeof $$.document.target.value.patient_id.date_of_birth === 'string'?$.DT_MOTOR_MS_REV_BROOKE >= $$.document.target.value.patient_id.date_of_birth:true |
| The Revised Brooke score must be an integer | typeof $.MS_MOTOR_MS_REV_BROOKE === 'number'?$.MS_MOTOR_MS_REV_BROOKE *1% 1===0:true |
| The revised Brooke date cannot be after date of death | typeof $.DT_MOTOR_MS_REV_BROOKE === 'string' && typeof $$.document.target.value.DT_DEATH === 'string'?$$.document.target.value.DT_DEATH >= $.DT_MOTOR_MS_REV_BROOKE:true |
| The revised Brooke date cannot be in the future | typeof $.DT_MOTOR_MS_REV_BROOKE === 'string'?new Date($.DT_MOTOR_MS_REV_BROOKE) |
List items
Section help
To enter a score for each side, please create one item per side
Revised Brooke side
Technical specs
CSV column name:
TX_TTL_REV_BROOKE|0|CD_MOTOR_MS_REV_BROOKE_SIDE
Required:
true
Options
| Label | Value |
| left | 1 |
| right | 2 |
Revised Brooke score
Technical specs
CSV column name:
TX_TTL_REV_BROOKE|0|MS_MOTOR_MS_REV_BROOKE
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
Measurement-v1.0
Data element:
ResultValue
Revised Brooke date
Technical specs
Format:
DD/MM/YYYY
CSV column name:
TX_TTL_REV_BROOKE|0|DT_MOTOR_MS_REV_BROOKE
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
Measurement-v1.0
Data element:
MeasurementDateStartTime
RHS
This is a container for multiple answers. See the reference documentation for more details. Below you can find the information about the fields of the container
Element conditions
| Message | Expression |
| The RHS score must be an integer | typeof $.MS_MOTOR_MS_RHS === 'number'?$.MS_MOTOR_MS_RHS *1% 1===0:true |
List items
RHS score
Technical specs
CSV column name:
TX_TTL_RHS|0|MS_MOTOR_MS_RHS
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
Measurement-v1.0
Data element:
ResultValue
RHS date
Technical specs
Format:
DD/MM/YYYY
CSV column name:
TX_TTL_RHS|0|DT_MOTOR_MS_RHS
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
Measurement-v1.0
Data element:
MeasurementDateStartTime
RULM
This is a container for multiple answers. See the reference documentation for more details. Below you can find the information about the fields of the container
Help
To enter a score for each side, please create one item per side
Element conditions
| Message | Expression |
| The RULM date cannot be before date of birth | typeof $.DT_MOTOR_MS_RULM === 'string' && typeof $$.document.target.value.patient_id.date_of_birth === 'string'?$.DT_MOTOR_MS_RULM >= $$.document.target.value.patient_id.date_of_birth:true |
| The RULM date cannot be after date of death | typeof $.DT_MOTOR_MS_RULM === 'string' && typeof $$.document.target.value.DT_DEATH === 'string'?$$.document.target.value.DT_DEATH >= $.DT_MOTOR_MS_RULM:true |
| The RULM date cannot be in the future | typeof $.DT_MOTOR_MS_RULM === 'string'?new Date($.DT_MOTOR_MS_RULM) |
| The RULM score must be an integer | typeof $.MS_MOTOR_MS_RULM === 'number'?$.MS_MOTOR_MS_RULM *1% 1===0:true |
List items
Section help
To enter a score for each side, please create one item per side
RULM side
Technical specs
CSV column name:
TX_TTL_RULM|0|CD_MOTOR_MS_RULM_SIDE
Required:
true
Options
| Label | Value |
| left | 1 |
| right | 2 |
RULM score
Technical specs
CSV column name:
TX_TTL_RULM|0|MS_MOTOR_MS_RULM
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
Measurement-v1.0
Data element:
ResultValue
RULM date
Technical specs
Format:
DD/MM/YYYY
CSV column name:
TX_TTL_RULM|0|DT_MOTOR_MS_RULM
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
Measurement-v1.0
Data element:
MeasurementDateStartTime
TIMPSI
This is a container for multiple answers. See the reference documentation for more details. Below you can find the information about the fields of the container
Element conditions
| Message | Expression |
| The TIMPSI score must be an integer | typeof $.MS_MOTOR_MS_TIMPSI === 'number'?$.MS_MOTOR_MS_TIMPSI *1% 1===0:true |
List items
TIMPSI score
Technical specs
CSV column name:
TX_TTL_TIMPSI|0|MS_MOTOR_MS_TIMPSI
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
Measurement-v1.0
Data element:
ResultValue
TIMPSI date
Technical specs
Format:
DD/MM/YYYY
CSV column name:
TX_TTL_TIMPSI|0|DT_MOTOR_MS_TIMPSI
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
Measurement-v1.0
Data element:
MeasurementDateStartTime
TUG
This is a container for multiple answers. See the reference documentation for more details. Below you can find the information about the fields of the container
Element conditions
| Message | Expression |
| The TUG date cannot be before date of birth | typeof $.DT_MOTOR_MS_TUG === 'string' && typeof $$.document.target.value.patient_id.date_of_birth === 'string'?$.DT_MOTOR_MS_TUG >= $$.document.target.value.patient_id.date_of_birth:true |
| The TUG date cannot be after date of death | typeof $.DT_MOTOR_MS_TUG === 'string' && typeof $$.document.target.value.DT_DEATH === 'string'?$$.document.target.value.DT_DEATH >= $.DT_MOTOR_MS_TUG:true |
| The TUG date cannot be in the future | typeof $.DT_MOTOR_MS_TUG === 'string'?new Date($.DT_MOTOR_MS_TUG) |
| The TUG score cannot contain more than 1 decimal | typeof $.MS_MOTOR_MS_TUG === 'number'?$.MS_MOTOR_MS_TUG*10%1===0:true |
List items
TUG score
Technical specs
CSV column name:
TX_TTL_TUG|0|MS_MOTOR_MS_TUG
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
Measurement-v1.0
Data element:
ResultValue
TUG date
Technical specs
Format:
DD/MM/YYYY
CSV column name:
TX_TTL_TUG|0|DT_MOTOR_MS_TUG
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
Measurement-v1.0
Data element:
MeasurementDateStartTime
Vignos
This is a container for multiple answers. See the reference documentation for more details. Below you can find the information about the fields of the container
Element conditions
| Message | Expression |
| The Vignos score must be an integer | typeof $.MS_MOTOR_MS_VIGNOS === 'number'?$.MS_MOTOR_MS_VIGNOS*1% 1===0:true |
List items
Vignos score
Technical specs
CSV column name:
TX_TTL_VIGNOS|0|MS_MOTOR_MS_VIGNOS
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
Measurement-v1.0
Data element:
ResultValue
Vignos date
Technical specs
Format:
DD/MM/YYYY
CSV column name:
TX_TTL_VIGNOS|0|DT_MOTOR_MS_VIGNOS
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
Measurement-v1.0
Data element:
MeasurementDateStartTime
WHO
This is a container for multiple answers. See the reference documentation for more details. Below you can find the information about the fields of the container
Element conditions
| Message | Expression |
| The Observed WHO score must be an integer | typeof $.MS_WHO_SCORE === 'number'?$.MS_WHO_SCORE *1% 1===0:true |
List items
Observed WHO score
Technical specs
CSV column name:
TX_TTL_WHO|0|MS_WHO_SCORE
Required:
true
Observed WHO date
Technical specs
Format:
DD/MM/YYYY
CSV column name:
TX_TTL_WHO|0|DT_WHO
Required:
true
What is the patient's dominant hand?
Technical specs
CSV column name:
CD_DOMI_HAND
Required:
false
Stable:
true
Options
| Label | Value |
| Left | 1 |
| Right | 2 |
| Ambidextrous | 3 |
12 Nutrition
Has the patient ever used a gastric or nasal feeding tube?
Technical specs
CSV column name:
CD_EVR_NGT
Required:
true
Stable:
true
Options
| Label | Value |
| Never | 1 |
| Previously | 2 |
| Currently | 3 |
| Unknown | 99 |
Validation
- Please complete the 'Feeding tube usage' information (error)
Feeding tube usage episode
This is a container for multiple answers. See the reference documentation for more details. Below you can find the information about the fields of the container
Help
Please enter here all episodes where the patient used a same type of feeding tube
Element conditions
| Message | Expression |
| Start date feeding tube usage cannot be before date of birth | typeof $.DT_NGT_START === 'string' && typeof $$.document.target.value.patient_id.date_of_birth === 'string'?$.DT_NGT_START >= $$.document.target.value.patient_id.date_of_birth:true |
| Start date feeding tube usage cannot be in the future | typeof $.DT_NGT_START === 'string'?new Date($.DT_NGT_START) |
| Start date feeding tube usage cannot be after date of death | typeof $.DT_NGT_START === 'string' && typeof $$.document.target.value.DT_DEATH === 'string'?$$.document.target.value.DT_DEATH >= $.DT_NGT_START:true |
| Stop date feeding tube usage cannot be before date of birth | typeof $.DT_NGT_STP === 'string' && typeof $$.document.target.value.patient_id.date_of_birth === 'string'?$.DT_NGT_STP >= $$.document.target.value.patient_id.date_of_birth:true |
| Stop date feeding tube usage cannot be in the future | typeof $.DT_NGT_STP === 'string'?new Date($.DT_NGT_STP) |
| Stop date feeding tube usage cannot be after date of death | typeof $.DT_NGT_STP === 'string' && typeof $$.document.target.value.DT_DEATH === 'string'?$$.document.target.value.DT_DEATH >= $.DT_NGT_STP:true |
| Start date feeding tube usage cannot be after stop date feeding tube usage | typeof $.DT_NGT_START === 'string' && typeof $.DT_NGT_STP === 'string'?$.DT_NGT_STP >= $.DT_NGT_START:true |
List items
Section help
Please enter here all episodes where the patient used a same type of feeding tube
Start date feeding tube usage
Help
Guidebook: If you know the exact date, enter dd/mm/yyyy; If only month and year are known, enter 15/mm/yyyy ; If only the year is known (i.e., feeding tube usage started in yyyy), enter 01/07/yyyy ; If a duration is known (i.e., feeding tube usage started X years ago), enter 01/07/current year – X ; If only an age is known (i.e., feeding tube usage started when I was X years old), enter birthday/birthmonth/birthyear + X.
Technical specs
Format:
DD/MM/YYYY
CSV column name:
TX_TTL_NGT|0|DT_NGT_START
Required:
true
Has the patient been continuously using the feeding tube?
Technical specs
CSV column name:
TX_TTL_NGT|0|CD_NGT_CONTLY
Required:
true
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
| Unknown | 99 |
Stop date feeding tube usage
Help
Guidebook: If you know the exact date, enter dd/mm/yyyy ; If only month and year are known, enter 15/mm/yyyy ; If only the year is known (i.e., feeding tube usage stopped in yyyy), enter 01/07/yyyy ; If a duration is known (i.e., feeding tube usage stopped X years ago), enter 01/07/current year – X ; If only an age is known (i.e., feeding tube usage stopped when I was X years old), enter birthday/birthmonth/birthyear + X.
Technical specs
Format:
DD/MM/YYYY
CSV column name:
TX_TTL_NGT|0|DT_NGT_STP
Only when:
Required:
true
Type of feeding tube
Technical specs
CSV column name:
TX_TTL_NGT|0|CD_NGT_TPE
Required:
true
Options
| Label | Value |
| Exclusive | 1 |
| Supplementary | 2 |
13 Pulmonary function
Has the patient ever used non-invasive ventilation?
Technical specs
CSV column name:
CD_NONINV_VENTIL
Required:
true
Stable:
true
Options
| Label | Value |
| Never | 1 |
| Previously | 2 |
| Currently | 3 |
| Unknown | 99 |
Mapping of the clinical building blocks (indicative only)
Concept:
Respiration-v3.2
Data element:
Validation
- Please complete the 'Non-invasive ventilation episode' information (error)
Non-invasive ventilation episode
This is a container for multiple answers. See the reference documentation for more details. Below you can find the information about the fields of the container
Help
Please enter here all episodes where the patient used non-invasive ventilation with the same frequency
Element conditions
| Message | Expression |
| Start date non-invasive ventilation cannot be before date of birth | typeof $.DT_NONINV_VENTIL_START === 'string' && typeof $$.document.target.value.patient_id.date_of_birth === 'string'?$.DT_NONINV_VENTIL_START >= $$.document.target.value.patient_id.date_of_birth:true |
| Start date non-invasive ventilation cannot be in the future | typeof $.DT_NONINV_VENTIL_START === 'string'?new Date($.DT_NONINV_VENTIL_START) |
| Start date non-invasive ventilation cannot be after date of death | typeof $.DT_NONINV_VENTIL_START=== 'string' && typeof $$.document.target.value.DT_DEATH === 'string'?$$.document.target.value.DT_DEATH >= $.DT_NONINV_VENTIL_START:true |
| Stop date non-invasive ventilation cannot be before date of birth | typeof $.DT_NONINV_VENTIL_STP === 'string' && typeof $$.document.target.value.patient_id.date_of_birth === 'string'?$.DT_NONINV_VENTIL_STP >= $$.document.target.value.patient_id.date_of_birth:true |
| Stop date non-invasive ventilation cannot be in the future | typeof $.DT_NONINV_VENTIL_STP === 'string'?new Date($.DT_NONINV_VENTIL_STP) |
| Stop date non-invasive ventilation cannot be after date of death | typeof $.DT_NONINV_VENTIL_STP=== 'string' && typeof $$.document.target.value.DT_DEATH === 'string'?$$.document.target.value.DT_DEATH >= $.DT_NONINV_VENTIL_STP:true |
| Start date non-invasive ventilation cannot be after stop date non-invasive ventilation | typeof $.DT_NONINV_VENTIL_START === 'string' && typeof $.DT_NONINV_VENTIL_STP === 'string'?$.DT_NONINV_VENTIL_STP >= $.DT_NONINV_VENTIL_START:true |
List items
Section help
Please enter here all episodes where the patient used non-invasive ventilation with the same frequency
Start date non-invasive ventilation
Help
Guidebook: If you know the exact date, enter dd/mm/yyyy ; If only month and year are known, enter 15/mm/yyyy ; If only the year is known (i.e., non-invasive ventilation started in yyyy), enter 01/07/yyyy ; If a duration is known (i.e., non-invasive ventilation started X years ago), enter 01/07/current year – X ; If only an age is known (i.e., non-invasive ventilation started when I was X years old), enter birthday/birthmonth/birthyear + X.
Technical specs
Format:
DD/MM/YYYY
CSV column name:
TX_TTL_NONINV_VENTIL|0|DT_NONINV_VENTIL_START
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
Respiration-v3.2
Data element:
MedicalDevice-v3.3.1: Startdate
Has the patient been continuously using non-invasive ventilation?
Technical specs
CSV column name:
TX_TTL_NONINV_VENTIL|0|CD_NONINV_VENTIL_CONTLY
Required:
true
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
| Unknown | 99 |
Stop date non-invasive ventilation
Help
Guidebook: If you know the exact date, enter dd/mm/yyyy ; If only month and year are known, enter 15/mm/yyyy ; If only the year is known (i.e., non-invasive ventilation stopped in yyyy), enter 01/07/yyyy ; If a duration is known (i.e., non-invasive ventilation stopped X years ago), enter 01/07/current year – X ; If only an age is known (i.e., non-invasive ventilation stopped when I was X years old), enter birthday/birthmonth/birthyear + X.
Technical specs
Format:
DD/MM/YYYY
CSV column name:
TX_TTL_NONINV_VENTIL|0|DT_NONINV_VENTIL_STP
Only when:
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
Respiration-v3.2
Data element:
MedicalDevice-v3.3.1: Enddate
Frequency of non-invasive ventilation
Help
Full-time means for 16 hours or more per 24 hours. Part-time awake and sleeping means for a total duration of less than 16 hours per 24 hours while awake and while sleeping, or only while awake. Part-time sleeping means for only while sleeping.
Technical specs
CSV column name:
TX_TTL_NONINV_VENTIL|0|CD_FREQ_NONINV_VENTIL
Required:
true
Options
| Label | Value |
| Full-time | 1 |
| Part-time awake and sleeping | 2 |
| Part-time sleeping | 3 |
| Unknown | 99 |
Has the patient ever used invasive ventilation?
Technical specs
CSV column name:
CD_INV_VENTIL
Required:
true
Stable:
true
Options
| Label | Value |
| Never | 1 |
| Previously | 2 |
| Currently | 3 |
| Unknown | 99 |
Mapping of the clinical building blocks (indicative only)
Concept:
be.en.hd.Respiration
Data element:
Validation
- If Why the patient did not receive Evrysdi despite being eligible is equal to "permanent invasive ventilation" then Has the patient ever used invasive ventilation? cannot be "never" (error)
- Please complete the 'Invasive ventilation episode' information (error)
Invasive ventilation episode
This is a container for multiple answers. See the reference documentation for more details. Below you can find the information about the fields of the container
Help
Please enter here all episodes where the patient used invasive ventilation with the same frequency
Element conditions
| Message | Expression |
| Start date invasive ventilation cannot be before date of birth | typeof $.DT_INV_VENTIL_START === 'string' && typeof $$.document.target.value.patient_id.date_of_birth === 'string'?$.DT_INV_VENTIL_START >= $$.document.target.value.patient_id.date_of_birth:true |
| Start date invasive ventilation cannot be in the future | typeof $.DT_INV_VENTIL_START === 'string'?new Date($.DT_INV_VENTIL_START) |
| Start date invasive ventilation cannot be after date of death | typeof $.DT_INV_VENTIL_START === 'string' && typeof $$.document.target.value.DT_DEATH === 'string'?$$.document.target.value.DT_DEATH >= $.DT_INV_VENTIL_START:true |
| Stop date invasive ventilation cannot be before date of birth | typeof $.DT_INV_VENTIL_STP === 'string' && typeof $$.document.target.value.patient_id.date_of_birth === 'string'?$.DT_INV_VENTIL_STP >= $$.document.target.value.patient_id.date_of_birth:true |
| Stop date invasive ventilation cannot be in the future | typeof $.DT_INV_VENTIL_STP === 'string'?new Date($.DT_INV_VENTIL_STP) |
| Stop date invasive ventilation cannot be after date of death | typeof $.DT_INV_VENTIL_STP === 'string' && typeof $$.document.target.value.DT_DEATH === 'string'?$$.document.target.value.DT_DEATH >= $.DT_INV_VENTIL_STP:true |
| Start date invasive ventilation cannot be after stop date invasive ventilation | typeof $.DT_INV_VENTIL_START === 'string' && typeof $.DT_INV_VENTIL_STP === 'string'?$.DT_INV_VENTIL_STP >= $.DT_INV_VENTIL_START:true |
List items
Section help
Please enter here all episodes where the patient used invasive ventilation with the same frequency
Start date invasive ventilation
Help
Guidebook: If you know the exact date, enter dd/mm/yyyy; If only month and year are known, enter 15/mm/yyyy ; If only the year is known (i.e., invasive ventilation started in yyyy), enter 01/07/yyyy ; If a duration is known (i.e., invasive ventilation started X years ago), enter 01/07/current year – X ; If only an age is known (i.e.,invasive ventilation started when I was X years old), enter birthday/birthmonth/birthyear + X.
Technical specs
Format:
DD/MM/YYYY
CSV column name:
TX_TTL_INV_VENTIL|0|DT_INV_VENTIL_START
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
Respiration-v3.2
Data element:
MedicalDevice-v3.3.1: Startdate
Has the patient been continuously using invasive ventilation?
Technical specs
CSV column name:
TX_TTL_INV_VENTIL|0|CD_INV_VENTIL_CONTLY
Required:
true
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
| Unknown | 99 |
Stop date invasive ventilation
Help
Guidebook: If you know the exact date, enter dd/mm/yyyy ; If only month and year are known, enter 15/mm/yyyy ; If only the year is known (i.e.,invasive ventilation stopped in yyyy), enter 01/07/yyyy ; If a duration is known (i.e., invasive ventilation stopped X years ago), enter 01/07/current year – X ; If only an age is known (i.e., invasive ventilation stopped when I was X years old), enter birthday/birthmonth/birthyear + X.
Technical specs
Format:
DD/MM/YYYY
CSV column name:
TX_TTL_INV_VENTIL|0|DT_INV_VENTIL_STP
Only when:
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
Respiration-v3.2
Data element:
MedicalDevice-v3.3.1: Enddate
Frequency of invasive ventilation
Help
Full-time means for 16 hours or more per 24 hours. Part-time awake and sleeping means for a total duration of less than 16 hours per 24 hours while awake and while sleeping, or only while awake. Part-time sleeping means for only while sleeping.
Technical specs
CSV column name:
TX_TTL_INV_VENTIL|0|CD_FREQ_INV_VENTIL
Required:
true
Options
| Label | Value |
| Full-time | 1 |
| Part-time awake and sleeping | 2 |
| Part-time sleeping | 3 |
| Unknown | 99 |
Does the patient need assistance in airway clearance and/or secretion mobilisation?
Help
Daily means once or more in each 24-hour period. Weekly means less frequently than daily, but used once or more in each 7-day period. Occasionally means less frequently than weekly.
Technical specs
CSV column name:
CD_ASSTNC_ACL_SECMOB
Required:
false
Options
| Label | Value |
| Daily | 2 |
| Weekly | 3 |
| Occasionally | 4 |
| Never | 5 |
| Unknown | 99 |
Has the patient ever used a cough assist device?
Technical specs
CSV column name:
CD_CAD
Required:
false
Stable:
true
Options
| Label | Value |
| Never | 1 |
| Previously | 2 |
| Currently | 3 |
| Unknown | 99 |
Mapping of the clinical building blocks (indicative only)
Concept:
Respiration-v3.2
Data element:
MedicalDevice
Validation
- Please complete the 'Cough assist device episode' information (error)
Cough assist device episode
This is a container for multiple answers. See the reference documentation for more details. Below you can find the information about the fields of the container
Element conditions
| Message | Expression |
| Start date cough assist device cannot be before date of birth | typeof $.DT_CAD_START === 'string' && typeof $$.document.target.value.patient_id.date_of_birth === 'string'?$.DT_CAD_START >= $$.document.target.value.patient_id.date_of_birth:true |
| Start date cough assist device cannot be in the future | typeof $.DT_CAD_START === 'string'?new Date($.DT_CAD_START) |
| Start date cough assist device cannot be after date of death | typeof $.DT_CAD_START === 'string' && typeof $$.document.target.value.DT_DEATH === 'string'?$$.document.target.value.DT_DEATH >= $.DT_CAD_START:true |
| Stop date cough assist device cannot be before date of birth | typeof $.DT_CAD_STP === 'string' && typeof $$.document.target.value.patient_id.date_of_birth === 'string'?$.DT_CAD_STP >= $$.document.target.value.patient_id.date_of_birth:true |
| Stop date cough assist device cannot be in the future | typeof $.DT_CAD_STP === 'string'?new Date($.DT_CAD_STP) |
| Stop date cough assist device cannot be after date of death | typeof $.DT_CAD_STP === 'string' && typeof $$.document.target.value.DT_DEATH === 'string'?$$.document.target.value.DT_DEATH >= $.DT_CAD_STP:true |
| Start date cough assist device cannot be after stop date cough assist device | typeof $.DT_CAD_START === 'string' && typeof $.DT_CAD_STP === 'string'?$.DT_CAD_STP >= $.DT_CAD_START:true |
List items
Start date cough assist device
Help
If you know the exact date, enter dd/mm/yyyy; If only month and year are known, enter 15/mm/yyyy ; If only the year is known (i.e., cough assist device started in yyyy), enter 01/07/yyyy ; If a duration is known (i.e., cough assist device started X years ago), enter 01/07/current year – X ; If only an age is known (i.e., cough assist device started when I was X years old), enter birthday/birthmonth/birthyear + X.
Technical specs
Format:
DD/MM/YYYY
CSV column name:
TX_TTL_CAD|0|DT_CAD_START
Required:
false
Mapping of the clinical building blocks (indicative only)
Concept:
Respiration-v3.2
Data element:
MedicalDevice-v3.3.1: Startdate
Has the patient been continuously using a cough assist device?
Technical specs
CSV column name:
TX_TTL_CAD|0|CD_CAD_CONTLY
Required:
false
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
| Unknown | 99 |
Stop date cough assist
Help
If you know the exact date, enter dd/mm/yyyy ; If only month and year are known, enter 15/mm/yyyy ; If only the year is known (i.e., stopped in yyyy), enter 01/07/yyyy ; If a duration is known (i.e., cough assist device stopped X years ago), enter 01/07/current year – X ; If only an age is known (i.e., cough assist device stopped when I was X years old), enter birthday/birthmonth/birthyear + X.
Technical specs
Format:
DD/MM/YYYY
CSV column name:
TX_TTL_CAD|0|DT_CAD_STP
Only when:
Required:
false
Has the patient had a Forced Vital Capacity (FVC) test?
Technical specs
CSV column name:
CD_FVC_TST
Required:
true
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
| Unknown | 99 |
Mapping of the clinical building blocks (indicative only)
Concept:
Measurement-v1.0
Data element:
MeasurementName
Validation
- Please complete the 'FVC test' information (error)
FVC test
This is a container for multiple answers. See the reference documentation for more details. Below you can find the information about the fields of the container
Help
Please provide the FVC test results from the current collection year (at least the most recent result)
Element conditions
| Message | Expression |
| Date of FVC test cannot be in the future | typeof $.DT_FVC_TST === 'string'?new Date($.DT_FVC_TST) |
| Date of FVC test cannot be before date of birth | (typeof $['DT_FVC_TST'] === 'string' && typeof $$.document.target.value.patient_id.date_of_birth === 'string')?new Date($$.document.target.value.patient_id.date_of_birth) |
| Date of FVC test cannot be after date of death | typeof $.DT_FVC_TST === 'string' && typeof $$.document.target.value.DT_DEATH === 'string'?$$.document.target.value.DT_DEATH >= $.DT_FVC_TST:true |
| The FVC (mL) must be an integer | typeof $.MS_FVC === 'number'?$.MS_FVC*1% 1===0:true |
| FVC predicted (%) cannot contain more than 1 decimal | typeof $.MS_FVC_PRED === 'number'?$.MS_FVC_PRED*10%1===0:true |
List items
Section help
Please provide the FVC test results from the current collection year (at least the most recent result)
Date of FVC test
Technical specs
Format:
DD/MM/YYYY
CSV column name:
TX_TTL_FVC|0|DT_FVC_TST
Only when:
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
Measurement-v1.0
Data element:
MeasurementDateStartTime
FVC (mL)
Help
The FVC should be an integer and expressed in ml.
Technical specs
CSV column name:
TX_TTL_FVC|0|MS_FVC
Only when:
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
Measurement-v1.0
Data element:
MeasurementValue
FVC predicted (%)
Help
The predicted FVC should be a number with maximal one decimal and expressed in percentage
Technical specs
CSV column name:
TX_TTL_FVC|0|MS_FVC_PRED
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
Measurement-v1.0
Data element:
MeasurementValue
Has the patient had a Peak Cough Flow (PCF) test?
Technical specs
CSV column name:
CD_PCF
Required:
true
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
| Unknown | 99 |
Mapping of the clinical building blocks (indicative only)
Concept:
Measurement-v1.0
Data element:
MeasurementName
PCF test
This is a container for multiple answers. See the reference documentation for more details. Below you can find the information about the fields of the container
Help
Please provide the PCF test results from the current collection year (at least the most recent result)
Element conditions
| Message | Expression |
| PCF (L/min) cannot contain more than 1 decimal | typeof $.MS_PCF === 'number'?$.MS_PCF*10%1===0:true |
| PCF date cannot be before date of birth | typeof $.DT_PCF === 'string' && typeof $$.document.target.value.patient_id.date_of_birth === 'string'?$.DT_PCF >= $$.document.target.value.patient_id.date_of_birth:true |
| PCF date cannot be after date of death | typeof $.DT_PCF === 'string' && typeof $$.document.target.value.DT_DEATH === 'string'?$$.document.target.value.DT_DEATH >= $.DT_PCF :true |
| PCF date cannot be in the future | typeof $.DT_PCF === 'string'?new Date($.DT_PCF) |
List items
Section help
Please provide the PCF test results from the current collection year (at least the most recent result)
Date of PCF item
Technical specs
Format:
DD/MM/YYYY
CSV column name:
TX_TTL_PCF|0|DT_PCF
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
Measurement-v1.0
Data element:
MeasurementValue
PCF (L/min)
Help
The PCF should be a number with maximal one decimal and expressed in L/min
Technical specs
CSV column name:
TX_TTL_PCF|0|MS_PCF
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
Measurement-v1.0
Data element:
MeasurementValue
14 Therapies and medications
Has the patient ever received a disease-modifying therapy for SMA?
Technical specs
CSV column name:
CD_EVR_DMT_SMA
Required:
true
Stable:
true
Options
| Label | Value |
| Yes | 4 |
| No | 0 |
| Unknown | 99 |
Validation
- If SMA type prior to treatment is equal to "patient is not treated" then has the patient ever received a disease-modifying therapy for SMA ? should be "no" (error)
Which therapies has the patient ever received?
Technical specs
CSV column name:
CD_THERPY_RECEIVD
Only when:
Required:
true
Stable:
true
Options
| Label | Value |
| Spinraza (nusinersen) | FL_THERPY_RECEIVD_NUS |
| Zolgensma | FL_THERPY_RECEIVD_ZOLG |
| Evrysdi (risdiplam) | FL_THERPY_RECEIVD_RISDPL |
| Other | FL_THERPY_RECEIVD_OTH |
Was the patient eligible to receive Zolgensma?
Technical specs
CSV column name:
CD_ELG_ZOLG
Required:
true
Stable:
true
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
Did the patient receive Zolgensma?
Technical specs
CSV column name:
CD_ZOLG
Only when:
Required:
true
Stable:
true
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
Why did the patient not receive Zolgensma despite being eligible?
Technical specs
CSV column name:
CD_NOT_RECEIV_ZOLG
Only when:
Required:
true
Stable:
true
Options
| Label | Value |
| AAV- 9 titer >1:50 | 1 |
| Liver dysfunction | 2 |
| Thrombocytopenia | 3 |
| Active infections | 4 |
| Parental decision | 5 |
| Other | 6 |
Please specify
Technical specs
CSV column name:
TX_NOT_RECEIV_ZOLG_OTH
Only when:
Required:
true
Stable:
true
Was the patient eligible to receive Evrysdi?
Technical specs
CSV column name:
CD_ELG_RISDPL
Required:
true
Stable:
true
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
Did the patient receive Evrysdi?
Technical specs
CSV column name:
CD_RISDPL
Only when:
Required:
true
Stable:
true
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
Why did the patient not receive Evrysdi despite being eligible?
Technical specs
CSV column name:
CD_NOT_RECEIV_RISDPL
Only when:
Required:
true
Stable:
true
Options
| Label | Value |
| Parental decision/patient choice | 1 |
| Permanent invasive ventilation | 2 |
| Symptoms are already too severe | 3 |
| Patient envisions a pregnancy | 4 |
| Patient will not comply to a daily treatment | 5 |
| Hypersensibility to excipients | 6 |
| Other | 7 |
Validation
- If Why the patient did not receive Evrysdi despite being eligible is equal to "permanent invasive ventilation" then Has the patient ever used invasive ventilation? cannot be "never" (error)
- If Why the patient did not receive Evrysdi despite being eligible is equal to "symptoms already too severe" then stage of disease cannot be "pre-symptomatic" (error)
Please specify
Technical specs
CSV column name:
TX_NOT_RECEIV_RISDPL_OTH
Only when:
Required:
true
Stable:
true
Spinraza (nusinersen)
Fields
When did the patient start receiving Spinraza?
Technical specs
Format:
DD/MM/YYYY
CSV column name:
TX_TTL_NUS|DT_START_NUS
Required:
true
Stable:
true
Mapping of the clinical building blocks (indicative only)
Concept:
MedicationAgreement-v1.2
Data element:
AdministrationDateTime
Has the patient continuously been receiving Spinraza up to now?
Technical specs
CSV column name:
TX_TTL_NUS|CD_CONTLY_NUS
Required:
true
Stable:
true
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
| Unknown | 99 |
When did the patient stop using Spinraza?
Technical specs
Format:
DD/MM/YYYY
CSV column name:
TX_TTL_NUS|DT_STP_NUS
Only when:
Required:
true
Stable:
true
Mapping of the clinical building blocks (indicative only)
Concept:
TimeInterval-v1.0
Data element:
endDateTime
Main reason for stopping
Technical specs
CSV column name:
TX_TTL_NUS|CD_MAIN_REAS_STP_NUS
Only when:
Required:
true
Stable:
true
Options
| Label | Value |
| Insurance coverage/funding | 1 |
| Side effects from the procedure | 2 |
| Side effects from drug | 3 |
| Insufficient benefit | 4 |
| Insufficient initial improvement | 5 |
| Loss of response | 6 |
| Scoliosis | 7 |
| Elective choice of other treatment | 8 |
| Participation to a clinical trial | 9 |
| Permanent invasive ventilation | 10 |
| Other | 11 |
| Unknown | 99 |
Mapping of the clinical building blocks (indicative only)
Concept:
MedicationUse2-v1.1.1
Data element:
ReasonForChangeOrDiscontinuationOfUse
Please specify
Technical specs
CSV column name:
TX_TTL_NUS|TX_MAIN_REAS_STP_NUS_OTH
Only when:
Required:
true
Stable:
true
Other reason(s) for stopping
Technical specs
CSV column name:
TX_TTL_NUS|CD_OTH_REAS_STP_NUS
Only when:
Required:
false
Stable:
true
Options
| Label | Value |
| Insurance coverage/funding | FL_INSUR_CVG |
| Side effects from the procedure | FL_AE_PROC |
| Side effects from drug | FL_AE_DRUG |
| Insufficient benefit | FL_INSUFF_BENFT |
| Insufficient initial improvement | FL_INSUFF_IMPROVE |
| Loss of response | FL_LOSS_RESP |
| Scoliosis | FL_SCOL |
| Elective choice of other treatment | FL_CHOICE_TREAT |
| Participation to a clinical trial | FL_PARTICIP_CTR |
| Permanent invasive ventilation | FL_PMT_IV |
| Other | FL_OTH |
| Unknown | FL_UNK |
Mapping of the clinical building blocks (indicative only)
Concept:
MedicationUse2-v1.1.1
Data element:
ReasonForChangeOrDiscontinuationOfUse
Please specify
Technical specs
CSV column name:
TX_TTL_NUS|TX_OTH_REAS_STP_NUS_OTH
Only when:
Required:
true
Stable:
true
Mapping of the clinical building blocks (indicative only)
Concept:
InstructionsForUse-v1.2.1
Data element:
Dosage
How was the medication dosed?
Technical specs
CSV column name:
TX_TTL_NUS|CD_MEDICT_DOS_NUS
Required:
true
Stable:
true
Options
| Label | Value |
| As an absolute value independent of body weight (e.g. 12 mg per administration) | 1 |
| Relative to body weight | 2 |
| Unknown dosage | 3 |
Mapping of the clinical building blocks (indicative only)
Concept:
InstructionsForUse-v1.2.1
Data element:
Dosage
Nusinersen dosage (in mg)
Technical specs
CSV column name:
TX_TTL_NUS|MS_DOSG_NUS_MG
Only when:
Required:
true
Stable:
true
Mapping of the clinical building blocks (indicative only)
Concept:
InstructionsForUse-v1.2.1
Data element:
Dosage
Nusinersen dosage (in mg/kg)
Technical specs
CSV column name:
TX_TTL_NUS|MS_DOSG_NUS_MG_KG
Only when:
Required:
true
Stable:
true
Mapping of the clinical building blocks (indicative only)
Concept:
InstructionsForUse-v1.2.1
Data element:
Dosage
Has the patient been following the recommended dosing schedule?
Help
The recommended dosing schedule is three loading doses administered at 14-day intervals, a fourth loading dose administered 30 days after the third dose, and maintenance doses once every 4 months thereafter. Deviation definition for nusinersen: The interval between any two consecutive administrations of nusinersen differs by 14 days or more from that specified in the applicable prescription information.
Technical specs
CSV column name:
TX_TTL_NUS|CD_FLLWG_DOSN_NUS
Required:
true
Stable:
true
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
| Unknown | 99 |
Mapping of the clinical building blocks (indicative only)
Concept:
InstructionsForUse-v1.2.2
Data element:
AdministeringSchedule
Please enter the administration dates
This is a container for multiple answers. See the reference documentation for more details. Below you can find the information about the fields of the container
Element conditions
| Message | Expression |
| Spinraza administration dates (first time) cannot be before date of birth | typeof $.DT_ADMIN_NUS === 'string' && typeof $$.document.target.value.patient_id.date_of_birth === 'string'?$.DT_ADMIN_NUS >= $$.document.target.value.patient_id.date_of_birth:true |
| Spinraza administration dates (first time) cannot be in the future | typeof $.DT_ADMIN_NUS === 'string'?new Date($.DT_ADMIN_NUS) |
| Spinraza administration dates (first time) cannot be after date of death | typeof $.DT_ADMIN_NUS === 'string' && typeof $$.document.target.value.DT_DEATH === 'string'?$$.document.target.value.DT_DEATH >= $.DT_ADMIN_NUS:true |
List items
Administration date
Technical specs
Format:
DD/MM/YYYY
CSV column name:
TX_TTL_NUS|TX_TTL_ADMIN_DT_NUS|DT_ADMIN_NUS
Required:
false
Main reason for not following the recommended dosing schedule
Technical specs
CSV column name:
TX_TTL_NUS|CD_REAS_NOT_FLLWG_DOSN_NUS
Only when:
Required:
true
Stable:
true
Options
| Label | Value |
| Illness | 1 |
| Access problem | 2 |
| Scoliosis surgery | 3 |
| Other | 4 |
| Unknown | 99 |
Mapping of the clinical building blocks (indicative only)
Concept:
MedicationUse2-v1.1.1
Data element:
ReasonForChangeOrDiscontinuationOfUse
Please specify the other reason for not following dosing schedule
Technical specs
CSV column name:
TX_TTL_NUS|TX_REAS_NOT_FLLWG_DOSN_NUS_OTH
Only when:
Required:
true
Stable:
true
Route of administration
Technical specs
CSV column name:
TX_TTL_NUS|CD_ROUT_ADMIN_NUS
Required:
true
Stable:
true
Options
| Label | Value |
| Intrathecal | 1 |
| Intravenous | 2 |
| Oral | 3 |
Mapping of the clinical building blocks (indicative only)
Concept:
InstructionsForUse-v1.2.2
Data element:
RouteOfAdministration
Has the patient ever restarted receiving Spinraza?
Technical specs
CSV column name:
TX_TTL_NUS|CD_REST_NUS
Only when:
Required:
true
Stable:
true
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
| Unknown | 99 |
When did the patient start receiving Spinraza again?
Technical specs
Format:
DD/MM/YYYY
CSV column name:
TX_TTL_NUS|DT_REST_NUS
Only when:
Required:
true
Stable:
true
Mapping of the clinical building blocks (indicative only)
Concept:
MedicationAgreement-v1.2
Data element:
AdministrationDateTime
Has the patient continuously been receiving Spinraza up to now?
Technical specs
CSV column name:
TX_TTL_NUS|CD_CONTLY_NUS_1
Only when:
Required:
true
Stable:
true
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
| Unknown | 99 |
When did the patient stop using Spinraza?
Technical specs
Format:
DD/MM/YYYY
CSV column name:
TX_TTL_NUS|DT_STP_NUS_1
Only when:
Required:
true
Stable:
true
Mapping of the clinical building blocks (indicative only)
Concept:
TimeInterval-v1.0
Data element:
endDateTime
Main reason for stopping
Technical specs
CSV column name:
TX_TTL_NUS|CD_MAIN_REAS_STP_NUS_1
Only when:
Required:
true
Stable:
true
Options
| Label | Value |
| Insurance coverage/funding | 1 |
| Side effects from the procedure | 2 |
| Side effects from drug | 3 |
| Insufficient benefit | 4 |
| Insufficient initial improvement | 5 |
| Loss of response | 6 |
| Scoliosis | 7 |
| Elective choice of other treatment | 8 |
| Participation to a clinical trial | 9 |
| Permanent invasive ventilation | 10 |
| Other | 11 |
| Unknown | 99 |
Mapping of the clinical building blocks (indicative only)
Concept:
MedicationUse2-v1.1.1
Data element:
ReasonForChangeOrDiscontinuationOfUse
Please specify
Technical specs
CSV column name:
TX_TTL_NUS|TX_MAIN_REAS_STP_NUS_OTH_1
Only when:
Required:
true
Stable:
true
Other reason(s) for stopping
Technical specs
CSV column name:
TX_TTL_NUS|CD_OTH_REAS_STP_NUS_1
Only when:
Required:
false
Stable:
true
Options
| Label | Value |
| Insurance coverage/funding | FL_INSUR_CVG |
| Side effects from the procedure | FL_AE_PROC |
| Side effects from drug | FL_AE_DRUG |
| Insufficient benefit | FL_INSUFF_BENFT |
| Insufficient initial improvement | FL_INSUFF_IMPROVE |
| Loss of response | FL_LOSS_RESP |
| Scoliosis | FL_SCOL |
| Elective choice of other treatment | FL_CHOICE_TREAT |
| Participation to a clinical trial | FL_PARTICIP_CTR |
| Permanent invasive ventilation | FL_PMT_IV |
| Other | FL_OTH |
| Unknown | FL_UNK |
Mapping of the clinical building blocks (indicative only)
Concept:
MedicationUse2-v1.1.1
Data element:
ReasonForChangeOrDiscontinuationOfUse
Please specify
Technical specs
CSV column name:
TX_TTL_NUS|TX_OTH_REAS_STP_NUS_OTH_1
Only when:
Required:
true
Stable:
true
How was the medication dosed?
Technical specs
CSV column name:
TX_TTL_NUS|CD_MEDICT_DOS_NUS_1
Only when:
Required:
true
Stable:
true
Options
| Label | Value |
| As an absolute value independent of body weight (e.g. 12 mg per administration) | 1 |
| Relative to body weight | 2 |
| Unknown dosage | 3 |
Mapping of the clinical building blocks (indicative only)
Concept:
InstructionsForUse-v1.2.1
Data element:
Dosage
Nusinersen dosage (in mg)
Technical specs
CSV column name:
TX_TTL_NUS|MS_DOSG_NUS_MG_1
Only when:
Required:
true
Stable:
true
Mapping of the clinical building blocks (indicative only)
Concept:
InstructionsForUse-v1.2.1
Data element:
Dosage
Nusinersen dosage (in mg/kg)
Technical specs
CSV column name:
TX_TTL_NUS|MS_DOSG_NUS_MG_KG_1
Only when:
Required:
true
Stable:
true
Mapping of the clinical building blocks (indicative only)
Concept:
InstructionsForUse-v1.2.1
Data element:
Dosage
Has the patient been following the recommended dosing schedule?
Help
The recommended dosing schedule is three loading doses administered at 14-day intervals, a fourth loading dose administered 30 days after the third dose, and maintenance doses once every 4 months thereafter. Deviation definition for nusinersen: the interval between any two consecutive administrations of nusinersen differs by 14 days or more from that specified in the applicable prescription information.
Technical specs
CSV column name:
TX_TTL_NUS|CD_FLLWG_DOSN_NUS_1
Only when:
Required:
true
Stable:
true
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
| Unknown | 99 |
Mapping of the clinical building blocks (indicative only)
Concept:
InstructionsForUse-v1.2.2
Data element:
AdministeringSchedule
Please enter the administration dates
This is a container for multiple answers. See the reference documentation for more details. Below you can find the information about the fields of the container
Element conditions
| Message | Expression |
| Spinraza administration dates (second time) cannot be before date of birth | typeof $.DT_ADMIN_NUS_1 === 'string' && typeof $$.document.target.value.patient_id.date_of_birth === 'string'?$.DT_ADMIN_NUS_1 >= $$.document.target.value.patient_id.date_of_birth:true |
| Spinraza administration dates (second time) cannot be in the future | typeof $.DT_ADMIN_NUS_1 === 'string'?new Date($.DT_ADMIN_NUS_1) |
| Spinraza administration dates (second time) cannot be after date of death | typeof $.DT_ADMIN_NUS_1 === 'string' && typeof $$.document.target.value.DT_DEATH === 'string'?$$.document.target.value.DT_DEATH >= $.DT_ADMIN_NUS_1:true |
List items
Administration date
Technical specs
Format:
DD/MM/YYYY
CSV column name:
TX_TTL_NUS|TX_TTL_ADMIN_DT_NUS_1|DT_ADMIN_NUS_1
Required:
false
Main reason for not following the recommended dosing schedule
Technical specs
CSV column name:
TX_TTL_NUS|CD_REAS_NOT_FLLWG_DOSN_NUS_1
Only when:
Required:
true
Stable:
true
Options
| Label | Value |
| Illness | 1 |
| Access problem | 2 |
| Scoliosis surgery | 3 |
| Other | 4 |
| Unknown | 99 |
Mapping of the clinical building blocks (indicative only)
Concept:
MedicationUse2-v1.1.1
Data element:
ReasonForChangeOrDiscontinuationOfUse
Please specify the other reason for not following dosing schedule
Technical specs
CSV column name:
TX_TTL_NUS|TX_REAS_NOT_FLLWG_DOSN_NUS_OTH_1
Only when:
Required:
true
Stable:
true
Route of administration
Technical specs
CSV column name:
TX_TTL_NUS|CD_ROUT_ADMIN_NUS_1
Only when:
Required:
true
Stable:
true
Options
| Label | Value |
| Intrathecal | 1 |
| Intravenous | 2 |
| Oral | 3 |
Mapping of the clinical building blocks (indicative only)
Concept:
InstructionsForUse-v1.2.2
Data element:
RouteOfAdministration
Zolgensma
Fields
When did the patient receive Zolgensma?
Technical specs
Format:
DD/MM/YYYY
CSV column name:
TX_TTL_ZOLG|DT_START_ZOLG
Required:
true
Stable:
true
Mapping of the clinical building blocks (indicative only)
Concept:
MedicationAdministration2-v1.1.1
Data element:
AdministrationDateTime
What was the dosage? (in x 10^14 vg/kg)
Technical specs
CSV column name:
TX_TTL_ZOLG|MS_DOSG_ZOLG
Required:
true
Stable:
true
Mapping of the clinical building blocks (indicative only)
Concept:
InstructionsForUse-v1.2.1
Data element:
Dosage
What was the patient's body weight at the time of the administration or shortly before or after? (in kg)
Technical specs
CSV column name:
TX_TTL_ZOLG|MS_BW_ZOLG
Required:
true
Stable:
true
Route of administration
Technical specs
CSV column name:
TX_TTL_ZOLG|CD_ROUT_ADMIN_ZOLG
Required:
true
Stable:
true
Options
| Label | Value |
| Intrathecal | 1 |
| Intravenous | 2 |
| Oral | 3 |
Mapping of the clinical building blocks (indicative only)
Concept:
InstructionsForUse-v1.2.2
Data element:
RouteOfAdministration
Has the patient received prophylactic systemic corticosteroids in relation to the adminstration of Zolgensma?
Technical specs
CSV column name:
TX_TTL_ZOLG|CD_CORTICOID_ZOLG
Required:
true
Stable:
true
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
| Unknown | 99 |
Mapping of the clinical building blocks (indicative only)
Concept:
MedicationAdministration2-v1.1.1
Data element:
AdministrationProduct::PharmaceuticalProduct
Corticoids treatment duration (in days)
Help
When counting the days, exclude the final tapering period in which the dose is gradually reduced at the end of the administration
Technical specs
CSV column name:
TX_TTL_ZOLG|MS_CORTICOID_DURA
Only when:
Required:
true
Stable:
true
Mapping of the clinical building blocks (indicative only)
Concept:
InstructionsForUse-v1.2.2
Data element:
AdministeringSchedule
Type of corticoids
Technical specs
CSV column name:
TX_TTL_ZOLG|CD_TPE_CORTICOID
Only when:
Required:
true
Stable:
true
Options
| Label | Value |
| Prednisone oral | 1 |
| Prednisolone oral | 2 |
| Unknown | 99 |
Has the patient received a different disease-modifying therapy (e.g. Spinraza or Risdiplam) since then?
Technical specs
CSV column name:
TX_TTL_ZOLG|CD_DMT_EVR
Required:
true
Stable:
true
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
| Unknown | 99 |
Mapping of the clinical building blocks (indicative only)
Concept:
MedicationAdministration2-v1.1.1
Data element:
AdministrationProduct::PharmaceuticalProduct
What was the main reason for switching to a different therapy?
Technical specs
CSV column name:
TX_TTL_ZOLG|CD_MAIN_REAS_CHNG_THER
Only when:
Required:
true
Stable:
true
Options
| Label | Value |
| Insurance coverage/funding | 1 |
| Side effects from the procedure | 2 |
| Side effects from drug | 3 |
| Insufficient benefit | 4 |
| Insufficient initial improvement | 5 |
| Loss of response | 6 |
| Scoliosis | 7 |
| Elective choice of other therapy | 8 |
| Participation to a clinical trial | 9 |
| Permanent invasive ventilation | 10 |
| Other | 11 |
| Unknown | 99 |
Mapping of the clinical building blocks (indicative only)
Concept:
MedicationUse2-v1.1.1
Data element:
ReasonForChangeOrDiscontinuationOfUse
Please specify
Technical specs
CSV column name:
TX_TTL_ZOLG|TX_MAIN_REAS_CHNG_THER_OTH
Only when:
Required:
true
Stable:
true
What were the other reasons for switching to a different therapy?
Technical specs
CSV column name:
TX_TTL_ZOLG|CD_OTH_REAS_CHNG_THER
Only when:
Required:
false
Stable:
true
Options
| Label | Value |
| Insurance coverage/funding | FL_INSUR_CVG |
| Side effects from the procedure | FL_AE_PROC |
| Side effects from drug | FL_AE_DRUG |
| Insufficient benefit | FL_INSUFF_BENFT |
| Insufficient initial improvement | FL_INSUFF_IMPROVE |
| Loss of response | FL_LOSS_RESP |
| Scoliosis | FL_SCOL |
| Elective choice of other therapy | FL_CHOICE_TREAT |
| Participation to a clinical trial | FL_PARTICIP_CTR |
| Permanent invasive ventilation | FL_PMT_IV |
| Other | FL_OTH |
| Unknown | FL_UNK |
Mapping of the clinical building blocks (indicative only)
Concept:
MedicationUse2-v1.1.1
Data element:
ReasonForChangeOrDiscontinuationOfUse
Please specify
Technical specs
CSV column name:
TX_TTL_ZOLG|TX_OTH_REAS_CHNG_THER_OTH
Only when:
Required:
true
Stable:
true
Was an anti-AAV9 antibody test performed?
Technical specs
CSV column name:
TX_TTL_ZOLG|CD_AAV9
Required:
false
Stable:
true
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
| Unknown | 99 |
AAV-9 test (1 item)
This is a container for multiple answers. See the reference documentation for more details. Below you can find the information about the fields of the container
Element conditions
| Message | Expression |
| AAV-9 date cannot be before date of birth | typeof $.DT_AAV9 === 'string' && typeof $$.document.target.value.patient_id.date_of_birth === 'string'?$.DT_AAV9 >= $$.document.target.value.patient_id.date_of_birth:true |
| AAV-9 date cannot be after date of death | typeof $.DT_AAV9 === 'string' && typeof $$.document.target.value.DT_DEATH === 'string'?$$.document.target.value.DT_DEATH >= $.DT_AAV9:true |
| AAV-9 date cannot be in the future | typeof $.DT_AAV9 === 'string'?new Date($.DT_AAV9) |
List items
Date of the AAV-9 test
Technical specs
Format:
DD/MM/YYYY
CSV column name:
TX_TTL_ZOLG|TX_TTL_AAV9|0|DT_AAV9
Required:
false
Results of the AAV-9 test
Technical specs
CSV column name:
TX_TTL_ZOLG|TX_TTL_AAV9|0|CD_AAV_RSLT
Required:
false
Options
| Label | Value |
| Antibody titer ≤1:50 | 1 |
| Antibody titer >1:50 | 2 |
| Unknown | 99 |
Evrysdi (risdiplam)
Fields
Evrysdi (risdiplam)
This is a container for multiple answers. See the reference documentation for more details. Below you can find the information about the fields of the container
Element conditions
| Message | Expression |
| Evrysdi dosage (in mg) cannot contain more than 2 decimals | typeof $.MS_DOSG_RISDPL_MG === 'number'?$.MS_DOSG_RISDPL_MG*100%1===0:true |
| Evrysdi dosage (in mg/kg) cannot contain more than 2 decimals | typeof $.MS_DOSG_RISDPL_MG_KG === 'number'?$.MS_DOSG_RISDPL_MG_KG*100%1===0:true |
| If Evrysdi (risdiplam) Main reason for stopping is equal to "scoliosis" then Diagnosed with scoliosis cannot be "no" | !($.CD_MAIN_REAS_STP_RISDPL.selectedOption === '6' && $$.document.target.value.CD_DIAGS_SCOL.selectedOption === '0') |
| If Evrysdi (risdiplam) Other reasons for stopping is equal to "scoliosis" then Diagnosed with scoliosis cannot be "no" | !($.CD_REAS_STP_RISDPL_OTH.selectedOptions.FL_SCOL === true && $$.document.target.value.CD_DIAGS_SCOL.selectedOption === '0') |
| If Evrysdi (risdiplam) Main reason for stopping is equal to "participation to a clinical trial" then Ever participated to a clinical trial cannot be "never" | !($.CD_MAIN_REAS_STP_RISDPL.selectedOption === '9' && $$.document.target.value.CD_CTR_PTCPD.selectedOption === '1') |
| If Evrysdi (risdiplam) Other reason for stopping is equal to "participation to a clinical trial" then Ever participated to a clinical trial cannot be "never" | !($.CD_REAS_STP_RISDPL_OTH.selectedOptions.FL_PARTICIP_CTR === true && $$.document.target.value.CD_CTR_PTCPD.selectedOption === '1') |
| If Evrysdi (risdiplam) Main reason for stopping is equal to "permanent invasive ventilation" then Ever used invasive ventilation cannot be "never" | !($.CD_MAIN_REAS_STP_RISDPL.selectedOption === '10' && $$.document.target.value.CD_INV_VENTIL.selectedOption === '1') |
| If Evrysdi (risdiplam) Other reason for stopping is equal to "permanent invasive ventilation" then Ever used invasive ventilation cannot be "never" | !($.CD_REAS_STP_RISDPL_OTH.selectedOptions.FL_PMT_IV === true && $$.document.target.value.CD_INV_VENTIL.selectedOption === '1') |
| If Did the patient start Evrysdi in the context of a clinical trial? is equal to "yes" then Ever participated to a clinical trial cannot be "never" | !($.CD_START_RISDPL_CT.selectedOption === '1' && $$.document.target.value.CD_CTR_PTCPD.selectedOption === '1') |
| Start date Evrysdi cannot be before date of birth | typeof $.DT_START_RISDPL === 'string' && typeof $$.document.target.value.patient_id.date_of_birth === 'string'?$.DT_START_RISDPL >= $$.document.target.value.patient_id.date_of_birth:true |
| Start date Evrysdi cannot be in the future | typeof $.DT_START_RISDPL === 'string'?new Date($.DT_START_RISDPL) |
| Start date Evrysdi cannot be after date of death | typeof $.DT_START_RISDPL === 'string' && typeof $$.document.target.value.DT_DEATH === 'string'?$$.document.target.value.DT_DEATH >= $.DT_START_RISDPL:true |
| Stop date Evrysdi cannot be in the future | typeof $.DT_STOP_RISDPL === 'string'?new Date($.DT_STOP_RISDPL) |
| Stop date Evrysdi cannot be before date of birth | typeof $.DT_STOP_RISDPL === 'string' && typeof $$.document.target.value.patient_id.date_of_birth === 'string'?$.DT_STOP_RISDPL >= $$.document.target.value.patient_id.date_of_birth:true |
| Start date Evrysdi cannot be after stop date Evrysdi | typeof $.DT_START_RISDPL === 'string' && typeof $.DT_STOP_RISDPL === 'string'?$.DT_STOP_RISDPL >= $.DT_START_RISDPL:true |
| Stop date Evrysdi cannot be after date of death | typeof $.DT_STOP_RISDPL === 'string' && typeof $$.document.target.value.DT_DEATH === 'string'?$$.document.target.value.DT_DEATH >= $.DT_STOP_RISDPL:true |
| Weight cannot contain more than 2 decimals | typeof $.MS_BW_RISDPL === 'number'?$.MS_BW_RISDPL*100%1===0:true |
List items
When did the patient start receiving Evrysdi?
Help
Please enter here all episodes where the patient received Evrysdi with a constant dosage
Technical specs
Format:
DD/MM/YYYY
CSV column name:
TX_TTL_RISDPL|TX_TTL_RISDPL_RPT|0|DT_START_RISDPL
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
MedicationAdministration2-v1.1.2
Data element:
AdministrationDateTime
Did the patient start Evrysdi in the context of a clinical trial?
Technical specs
CSV column name:
TX_TTL_RISDPL|TX_TTL_RISDPL_RPT|0|CD_START_RISDPL_CT
Required:
true
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
Name of the clinical trial
Technical specs
CSV column name:
TX_TTL_RISDPL|TX_TTL_RISDPL_RPT|0|CD_START_RISDPL_CT_NAME
Only when:
Required:
true
Options
| Label | Value |
| Firefish | 1 |
| Sunfish | 2 |
| Jewelfish | 3 |
| Rainbowfish | 4 |
| Manatee | 5 |
Has the patient continuously been receiving Evrysdi up to now?
Technical specs
CSV column name:
TX_TTL_RISDPL|TX_TTL_RISDPL_RPT|0|CD_CONTLY_RISDPL
Required:
true
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
| Unknown | 99 |
When did the patient stop using Evrysdi?
Technical specs
Format:
DD/MM/YYYY
CSV column name:
TX_TTL_RISDPL|TX_TTL_RISDPL_RPT|0|DT_STOP_RISDPL
Only when:
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
TimeInterval-v1.0
Data element:
endDateTime
Main reason for stopping
Technical specs
CSV column name:
TX_TTL_RISDPL|TX_TTL_RISDPL_RPT|0|CD_MAIN_REAS_STP_RISDPL
Only when:
Required:
true
Options
| Label | Value |
| Insurance coverage/funding | 1 |
| Side effects from the procedure | 2 |
| Side effects from drug | 3 |
| Insufficient benefit | 4 |
| Insufficient initial improvement | 5 |
| Scoliosis | 6 |
| Loss of response | 7 |
| Elective choice of other treatment | 8 |
| Participation to a clinical trial | 9 |
| Permanent invasive ventilation | 10 |
| Other | 11 |
| Unknown | 99 |
Mapping of the clinical building blocks (indicative only)
Concept:
MedicationUse2-v1.1.1
Data element:
ReasonForChangeOrDiscontinuationOfUse
Please specify
Technical specs
CSV column name:
TX_TTL_RISDPL|TX_TTL_RISDPL_RPT|0|TX_MAIN_REAS_STP_RISDPL_OTH
Only when:
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
MedicationUse2-v1.1.1
Data element:
ReasonForChangeOrDiscontinuationOfUse
Other reasons for stopping
Technical specs
CSV column name:
TX_TTL_RISDPL|TX_TTL_RISDPL_RPT|0|CD_REAS_STP_RISDPL_OTH
Only when:
Required:
false
Options
| Label | Value |
| Insurance coverage/funding | FL_INSUR_CVG |
| Side effects from the procedure | FL_AE_PROC |
| Side effects from drug | FL_AE_DRUG |
| Insufficient benefit | FL_INSUFF_BENFT |
| Insufficient initial improvement | FL_INSUFF_IMPROVE |
| Scoliosis | FL_SCOL |
| Loss of response | FL_LOSS_RESP |
| Elective choice of other treatment | FL_CHOICE_TREAT |
| Participation to a clinical trial | FL_PARTICIP_CTR |
| Permanent invasive ventilation | FL_PMT_IV |
| Other | FL_OTH |
| Unknown | FL_UNK |
Please specify
Technical specs
CSV column name:
TX_TTL_RISDPL|TX_TTL_RISDPL_RPT|0|TX_REAS_STP_RISDPL_OTH
Only when:
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
MedicationUse2-v1.1.1
Data element:
ReasonForChangeOrDiscontinuationOfUse
How was the medication dosed?
Technical specs
CSV column name:
TX_TTL_RISDPL|TX_TTL_RISDPL_RPT|0|CD_MEDICT_DOS_RISDPL
Required:
true
Options
| Label | Value |
| As an absolute value independent of body weight (e.g. 5 mg per administration) | 1 |
| Relative to body weight (e.g. 0.25 mg/kg) | 2 |
| Unknown dosage | 3 |
Mapping of the clinical building blocks (indicative only)
Concept:
InstructionsForUse-v1.2.1
Data element:
Dosage
Evrysdi dosage (in mg)
Technical specs
CSV column name:
TX_TTL_RISDPL|TX_TTL_RISDPL_RPT|0|MS_DOSG_RISDPL_MG
Only when:
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
InstructionsForUse-v1.2.1
Data element:
Dosage
Evrysdi dosage (in mg/kg)
Technical specs
CSV column name:
TX_TTL_RISDPL|TX_TTL_RISDPL_RPT|0|MS_DOSG_RISDPL_MG_KG
Only when:
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
InstructionsForUse-v1.2.1
Data element:
Dosage
What was the patient's body weight when he/she began receiving Evrysdi or shortly before or after? (in kg)
Technical specs
CSV column name:
TX_TTL_RISDPL|TX_TTL_RISDPL_RPT|0|MS_BW_RISDPL
Required:
true
Has the patient been taking Evrysdi daily?
Help
Deviation definition for risdiplam: If the individual has ever failed to take the prescribed dosage of risdiplam for 7 consecutive days or more during this episode.
Technical specs
CSV column name:
TX_TTL_RISDPL|TX_TTL_RISDPL_RPT|0|CD_RISDPL_DAILY
Required:
true
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
| Unknown | 99 |
Mapping of the clinical building blocks (indicative only)
Concept:
MedicationUse2-v1.1.1
Data element:
UseIndicator
Main reason for not following the recommended dosing schedule
Technical specs
CSV column name:
TX_TTL_RISDPL|TX_TTL_RISDPL_RPT|0|CD_REAS_NOT_FLLWG_RISDPL
Only when:
Required:
true
Options
| Label | Value |
| Illness | 1 |
| Access problem | 2 |
| Scoliosis surgery | 3 |
| Other | 4 |
| Unknown | 99 |
Mapping of the clinical building blocks (indicative only)
Concept:
MedicationUse2-v1.1.1
Data element:
ReasonForChangeOrDiscontinuationOfUse
Please specify the other reason for not following dosing schedule
Technical specs
CSV column name:
TX_TTL_RISDPL|TX_TTL_RISDPL_RPT|0|TX_REAS_NOT_FLLWG_RISDPL_OTH
Only when:
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
MedicationUse2-v1.1.1
Data element:
ReasonForChangeOrDiscontinuationOfUse
Route of administration
Technical specs
CSV column name:
TX_TTL_RISDPL|TX_TTL_RISDPL_RPT|0|CD_ROUT_ADMIN_RISDPL
Required:
true
Options
| Label | Value |
| Intrathecal | 1 |
| Intravenous | 2 |
| Oral | 3 |
Mapping of the clinical building blocks (indicative only)
Concept:
InstructionsForUse-v1.2.2
Data element:
RouteOfAdministration
Has the patient restarted receiving Evrysdi?
Help
if you answered yes to this question, please enter another item below this item.
Technical specs
CSV column name:
TX_TTL_RISDPL|TX_TTL_RISDPL_RPT|0|CD_REST_RISDPL
Only when:
Required:
true
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
| Unknown | 99 |
Other DMT
Fields
Disease-modifying therapy
This is a container for multiple answers. See the reference documentation for more details. Below you can find the information about the fields of the container
Element conditions
| Message | Expression |
| Dosage given cannot contain more than 1 decimal | typeof $.MS_DOSG_OTH_DMT === 'number'?$.MS_DOSG_OTH_DMT*10%1===0:true |
| If Other DMT Main reason for stopping is equal to "scoliosis" then Diagnosed with scoliosis cannot be "no" | !($.CD_MAIN_REAS_STP_OTH_DMT.selectedOption === '6' && $$.document.target.value.CD_DIAGS_SCOL.selectedOption === '0') |
| If Other DMT Other reasons for stopping is equal to "scoliosis" then Diagnosed with scoliosis cannot be "no" | !($.CD_REAS_STP_OTH_DMT.selectedOptions.FL_SCOL === true && $$.document.target.value.CD_DIAGS_SCOL.selectedOption === '0') |
| If Other DMT Main reason for stopping is equal to "participation to a clinical trial" then Ever participated to a clinical trial? cannot be "never" | !($.CD_MAIN_REAS_STP_OTH_DMT.selectedOption === '9' && $$.document.target.value.CD_CTR_PTCPD.selectedOption === '1') |
| If Other DMT Other reason for stopping is equal to "participation to a clinical trial" then Ever participated to a clinical trial cannot be "never" | !($.CD_REAS_STP_OTH_DMT.selectedOptions.FL_PARTICIP_CTR === true && $$.document.target.value.CD_CTR_PTCPD.selectedOption === '1') |
| If Spinraza Main reason for stopping is equal to "permanent invasive ventilation" then Ever used invasive ventilation cannot be "never" | !($.CD_MAIN_REAS_STP_OTH_DMT.selectedOption === '10' && $$.document.target.value.CD_INV_VENTIL.selectedOption === '1') |
| If Other DMT Other reason for stopping is equal to "permanent invasive ventilation" then Ever used invasive ventilation cannot be "never" | !($.CD_REAS_STP_OTH_DMT.selectedOptions.FL_PMT_IV === true && $$.document.target.value.CD_INV_VENTIL.selectedOption === '1') |
| Start date other DMT cannot be before date of birth | typeof $.DT_START_OTH_DMT === 'string' && typeof $$.document.target.value.patient_id.date_of_birth === 'string'?$.DT_START_OTH_DMT >= $$.document.target.value.patient_id.date_of_birth:true |
| Start date other DMT cannot be in the future | typeof $.DT_START_OTH_DMT === 'string'?new Date($.DT_START_OTH_DMT) |
| Start date other DMT cannot be after date of death | typeof $.DT_START_OTH_DMT === 'string' && typeof $$.document.target.value.DT_DEATH === 'string'?$$.document.target.value.DT_DEATH >= $.DT_START_OTH_DMT:true |
| Stop date other DMT cannot be before date of birth | typeof $.DT_STOP_OTH_DMT === 'string' && typeof $$.document.target.value.patient_id.date_of_birth === 'string'?$.DT_STOP_OTH_DMT >= $$.document.target.value.patient_id.date_of_birth:true |
| Stop date other DMT cannot be in the future | typeof $.DT_STOP_OTH_DMT === 'string'?new Date($.DT_STOP_OTH_DMT) |
| Stop date other DMT cannot be after date of death | typeof $.DT_STOP_OTH_DMT === 'string' && typeof $$.document.target.value.DT_DEATH === 'string'?$$.document.target.value.DT_DEATH >= $.DT_STOP_OTH_DMT:true |
| Start date other DMT cannot be after stop date other DMT | typeof $.DT_START_OTH_DMT === 'string' && typeof $.DT_STOP_OTH_DMT === 'string'?$.DT_STOP_OTH_DMT >= $.DT_START_OTH_DMT:true |
List items
Which disease-modifying therapy for SMA is/was the patient receiving?
Technical specs
CSV column name:
TX_TTL_OTH_DMT|TX_TTL_DMT|0|TX_DMT_SMA_SPECIF
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
MedicationAgreement-v1.2
Data element:
ProductUsed::PharmaceuticalProduct
Start date
Technical specs
Format:
DD/MM/YYYY
CSV column name:
TX_TTL_OTH_DMT|TX_TTL_DMT|0|DT_START_OTH_DMT
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
TimeInterval-v1.0
Data element:
startDateTime
Dosage given
Technical specs
CSV column name:
TX_TTL_OTH_DMT|TX_TTL_DMT|0|MS_DOSG_OTH_DMT
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
InstructionsForUse-v1.2.1
Data element:
Dosage
Unit of dosage
Technical specs
CSV column name:
TX_TTL_OTH_DMT|TX_TTL_DMT|0|TX_DOSG_OTH_DMT_UNIT
Required:
true
Route of administration
Technical specs
CSV column name:
TX_TTL_OTH_DMT|TX_TTL_DMT|0|CD_ROUT_ADMIN_OTH_DMT
Required:
true
Options
| Label | Value |
| Intrathecal injection | 1 |
| Intravenous | 2 |
| Oral | 3 |
| Other | 4 |
Mapping of the clinical building blocks (indicative only)
Concept:
InstructionsForUse-v1.2.1
Data element:
RouteOfAdministration
Please specify the other route of administration
Technical specs
CSV column name:
TX_TTL_OTH_DMT|TX_TTL_DMT|0|TX_ROUT_ADMIN_OTH_DMT_OTH
Only when:
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
InstructionsForUse-v1.2.1
Data element:
RouteOfAdministration
Has the patient continuously been receiving other DMT up to now ?
Technical specs
CSV column name:
TX_TTL_OTH_DMT|TX_TTL_DMT|0|CD_CONTLY_OTH_DMT
Required:
true
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
| Unknown | 99 |
Stop date
Technical specs
Format:
DD/MM/YYYY
CSV column name:
TX_TTL_OTH_DMT|TX_TTL_DMT|0|DT_STOP_OTH_DMT
Only when:
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
TimeInterval-v1.0
Data element:
endDateTime
Main reason for stopping
Technical specs
CSV column name:
TX_TTL_OTH_DMT|TX_TTL_DMT|0|CD_MAIN_REAS_STP_OTH_DMT
Only when:
Required:
true
Options
| Label | Value |
| Insurance coverage/funding | 1 |
| Side effects from the procedure | 2 |
| Side effects from drug | 3 |
| Insufficient benefit | 4 |
| Insufficient initial improvement | 5 |
| Scoliosis | 6 |
| Loss of response | 7 |
| Elective choice of other treatment | 8 |
| Participation to a clinical trial | 9 |
| Permanent invasive ventilation | 10 |
| Other | 11 |
| Unknown | 99 |
Mapping of the clinical building blocks (indicative only)
Concept:
MedicationUse2-v1.1.1
Data element:
ReasonForChangeOrDiscontinuationOfUse
Please specify
Technical specs
CSV column name:
TX_TTL_OTH_DMT|TX_TTL_DMT|0|TX_MAIN_REAS_STP_OTH_DMT_OTH
Only when:
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
MedicationUse2-v1.1.1
Data element:
ReasonForChangeOrDiscontinuationOfUse
Other reasons for stopping
Technical specs
CSV column name:
TX_TTL_OTH_DMT|TX_TTL_DMT|0|CD_REAS_STP_OTH_DMT
Only when:
Required:
false
Options
| Label | Value |
| Insurance coverage/funding | FL_INSUR_CVG |
| Side effects from the procedure | FL_AE_PROC |
| Side effects from drug | FL_AE_DRUG |
| Insufficient benefit | FL_INSUFF_BENFT |
| Insufficient initial improvement | FL_INSUFF_IMPROVE |
| Scoliosis | FL_SCOL |
| Loss of response | FL_LOSS_RESP |
| Elective choice of other treatment | FL_CHOICE_TREAT |
| Participation to a clinical trial | FL_PARTICIP_CTR |
| Permanent invasive ventilation | FL_PMT_IV |
| Other | FL_OTH |
| Unknown | FL_UNK |
Mapping of the clinical building blocks (indicative only)
Concept:
MedicationUse2-v1.1.1
Data element:
ReasonForChangeOrDiscontinuationOfUse
Please specify
Technical specs
CSV column name:
TX_TTL_OTH_DMT|TX_TTL_DMT|0|TX_REAS_STP_OTH_DMT_OTH
Only when:
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
MedicationUse2-v1.1.1
Data element:
ReasonForChangeOrDiscontinuationOfUse
Is/was the patient following the current recommended dosing schedule?
Technical specs
CSV column name:
TX_TTL_OTH_DMT|TX_TTL_DMT|0|CD_FLLWG_DOSG_OTH_DMT
Required:
true
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
| Not applicable | 2 |
| Unknown | 99 |
Mapping of the clinical building blocks (indicative only)
Concept:
MedicationUse2-v1.1.1
Data element:
AsAgreedIndicator
Main reason for not following dosing schedule
Technical specs
CSV column name:
TX_TTL_OTH_DMT|TX_TTL_DMT|0|CD_REAS_NOT_FLLWG_OTH_DMT
Only when:
Required:
true
Options
| Label | Value |
| Illness | 1 |
| Access problem | 2 |
| Scoliosis surgery | 3 |
| Other | 4 |
| Unknown | 99 |
Mapping of the clinical building blocks (indicative only)
Concept:
MedicationUse2-v1.1.1
Data element:
ReasonForChangeOrDiscontinuationOfUse
Please specify the other reason for not following dosing schedule
Technical specs
CSV column name:
TX_TTL_OTH_DMT|TX_TTL_DMT|0|TX_REAS_NOT_FLLWG_OTH_DMT
Only when:
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
MedicationUse2-v1.1.1
Data element:
ReasonForChangeOrDiscontinuationOfUse
Allopathic drugs and rehabilitation
Fields
Has the patient taken any prescribed allopathic drugs in the last 12 months (baseline) / since the last registry update (follow-up)?
Help
As data are collected yearly, please only consider the last 12 months in case of the first registration of a patient.
Technical specs
CSV column name:
TX_TTL_ALLOPATH_DRUG_REHAB|CD_ALLOPATH_DRUG
Required:
true
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
| Unknown | 99 |
Allopathic drugs episode
This is a container for multiple answers. See the reference documentation for more details. Below you can find the information about the fields of the container
Help
An entry is needed for each different drug (and drug episode) or immunization. Please enter a repeat for each specific drug received by the patient even if you do not know the dates of treatment.
Element conditions
| Message | Expression |
| Start date allopathic drug cannot be before date of birth | typeof $.DT_START_ALLOPATH_DRUG === 'string' && typeof $$.document.target.value.patient_id.date_of_birth === 'string'?$.DT_START_ALLOPATH_DRUG >= $$.document.target.value.patient_id.date_of_birth:true |
| Start date allopathic drug cannot be in the future | typeof $.DT_START_ALLOPATH_DRUG === 'string'?new Date($.DT_START_ALLOPATH_DRUG) |
| Start date allopathic drug cannot be after date of death | typeof $.DT_START_ALLOPATH_DRUG === 'string' && typeof $$.document.target.value.DT_DEATH === 'string'?$$.document.target.value.DT_DEATH >= $.DT_START_ALLOPATH_DRUG:true |
| Stop date allopathic drug cannot be before date of birth | typeof $.DT_END_ALLOPATH_DRUG === 'string' && typeof $$.document.target.value.patient_id.date_of_birth === 'string'?$.DT_END_ALLOPATH_DRUG >= $$.document.target.value.patient_id.date_of_birth:true |
| Stop date allopathic drug cannot be in the future | typeof $.DT_END_ALLOPATH_DRUG === 'string'?new Date($.DT_END_ALLOPATH_DRUG) |
| Stop date allopathic drug cannot be after date of death | typeof $.DT_END_ALLOPATH_DRUG === 'string' && typeof $$.document.target.value.DT_DEATH === 'string'?$$.document.target.value.DT_DEATH >= $.DT_END_ALLOPATH_DRUG:true |
| Start date allopathic drug cannot be after stop date allopathic drug | typeof $.DT_START_ALLOPATH_DRUG === 'string' && typeof $.DT_END_ALLOPATH_DRUG === 'string'?$.DT_END_ALLOPATH_DRUG >= $.DT_START_ALLOPATH_DRUG:true |
List items
Section help
An entry is needed for each different drug (and drug episode) or immunization. Please enter a repeat for each specific drug received by the patient even if you do not know the dates of treatment.
Name of drug
Technical specs
CSV column name:
TX_TTL_ALLOPATH_DRUG_REHAB|TX_TTL_ALLOPATH_DRUG|0|CD_NAM_ALLOPATH_DRUG
Required:
true
Options
| Label | Value |
| Bone health: Vitamin D | 1 |
| Bone health: Calcium | 2 |
| Bone health: Biphosphonate | 3 |
| Gastro intestinal system: Drugs for gastroesophageal reflux | 4 |
| Gastro intestinal system: Drugs for constipation | 5 |
| Respiratory system: Antibiotics | 6 |
| Respiratory system: Anticholinergic drugs | 7 |
| Immunisations: Annual influenza immunizations | 8 |
| Immunisations: Annual pneumococcal immunizations | 9 |
| Supplements: Creatine | 10 |
| Supplements: Acetyl-L-carnitine | 11 |
| Supplements: Phenylbutyrate | 12 |
| Supplements: Gabapentin | 13 |
| Supplements: Thyrotropin-releasing hormone | 14 |
| Supplements: Hydroxyurea | 15 |
| Supplements: Valproate | 16 |
| Supplements: Albuterol | 17 |
| Other | 18 |
Mapping of the clinical building blocks (indicative only)
Concept:
be.en.hd.MedicationUse
Data element:
ProductUsed::PharmaceuticalProduct:MedicationCode
Please specify the other drug
Technical specs
CSV column name:
TX_TTL_ALLOPATH_DRUG_REHAB|TX_TTL_ALLOPATH_DRUG|0|TX_NAM_ALLOPATH_DRUG_OTH
Only when:
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
be.en.hd.MedicationUse
Data element:
ProductUsed::PharmaceuticalProduct:MedicationCode
Start date medication
Technical specs
Format:
DD/MM/YYYY
CSV column name:
TX_TTL_ALLOPATH_DRUG_REHAB|TX_TTL_ALLOPATH_DRUG|0|DT_START_ALLOPATH_DRUG
Only when:
Required:
false
Is the patient still taking this medication?
Technical specs
CSV column name:
TX_TTL_ALLOPATH_DRUG_REHAB|TX_TTL_ALLOPATH_DRUG|0|CD_CONTNG_ALLOPATH_DRUG
Only when:
Required:
false
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
| Unknown | 99 |
Stop date medication
Technical specs
Format:
DD/MM/YYYY
CSV column name:
TX_TTL_ALLOPATH_DRUG_REHAB|TX_TTL_ALLOPATH_DRUG|0|DT_END_ALLOPATH_DRUG
Only when:
Required:
false
Annual immunizations - Date
Technical specs
Format:
DD/MM/YYYY
CSV column name:
TX_TTL_ALLOPATH_DRUG_REHAB|TX_TTL_ALLOPATH_DRUG|0|DT_ANN_IMMZT
Only when:
Required:
false
Has the patient received any of the following or any other rehabilitative interventions in the last 12 months(baseline) / since the last registry update (follow-up)?
Help
Please select all that apply.
Technical specs
CSV column name:
TX_TTL_ALLOPATH_DRUG_REHAB|CD_REHAB_INTVNT
Required:
true
Options
| Label | Value |
| Unknown | FL_REHAB_UNK |
| None | FL_REHAB_NO |
| Physiotherapy sessions (e.g. stretches) | FL_REHAB_PHYSIO |
| Respiratory physiotherapy sessions | FL_REHAB_RESPI_PHYSIO |
| Massage | FL_REHAB_MASSAGE |
| Home programme (e.g. stretches/exercises) | FL_REHAB_HOM_PROG |
| Hydrotherapy/water-based activity | FL_REHAB_H2O_ACTVY |
| Management of contractures using orthotics (e.g. ankle foot orthoses) | FL_REHAB_MGM_CONTR |
| Spinal brace | FL_REHAB_SPIN_BRACE |
| Occupational therapy sessions / input for home or equipment | FL_REHAB_OCCUP_THERPY |
| Speech and language therapy sessions | FL_REHAB_SPEECH_LANG |
| Other | FL_REHAB_OTH |
Please specify
Technical specs
CSV column name:
TX_TTL_ALLOPATH_DRUG_REHAB|TX_REHAB_INTVNT_OTH
Only when:
Required:
true
15 Hospitalisations and comorbidities
Has the patient been hospitalised in the last 12 months (baseline) / since the last registry update (follow-up)?
Help
As data are collected yearly, please only consider the last 12 months in case of the first registration of a patient.
Technical specs
CSV column name:
CD_HOSPZ_PAT
Required:
true
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
| Unknown | 99 |
Mapping of the clinical building blocks (indicative only)
Concept:
Encounter-v4.0.1
Data element:
Validation
- Please complete the 'Hospitalisation' information (error)
Hospitalisation details (1 items)
This is a container for multiple answers. See the reference documentation for more details. Below you can find the information about the fields of the container
Element conditions
| Message | Expression |
| If Reason for planned hospitalization is equal to "G-tube placement" then Ever used a gastric or nasal feeding tube cannot be "no" | !($.CD_REAS_PLND_HOSPZ.selectedOption === '1' && $$.document.target.value.CD_EVR_NGT.selectedOption === '1') |
| If Reason for planned hospitalization is equal to "scoliosis surgery" then scoliosis surgery cannot be "no" | !($.CD_REAS_PLND_HOSPZ.selectedOption === '3' && $$.document.target.value.CD_SCOL_SURG.selectedOption === '0') |
| If Reason for planned hospitalization is equal to "disease modifying therapy" then Has the patient ever received a disease-modifying therapy for SMA? should be "yes" | !($.CD_REAS_PLND_HOSPZ.selectedOption === '6' && ($$.document.target.value.CD_EVR_DMT_SMA.selectedOption === '0' ||$$.document.target.value.CD_EVR_DMT_SMA.selectedOption === '99')) |
| Number of nights spent in the hospital should be an integer | typeof $.MS_NGHT_HOSP === 'number'?$.MS_NGHT_HOSP *1% 1===0:true |
List items
Date of hospitalisation
Technical specs
Format:
DD/MM/YYYY
CSV column name:
TX_TTL_HOSPZ|0|DT_HOSPZ
Required:
true
Hospitalisation type
Technical specs
CSV column name:
TX_TTL_HOSPZ|0|CD_HOSPZ_TPE
Required:
true
Options
| Label | Value |
| Planned | 1 |
| Acute | 2 |
Mapping of the clinical building blocks (indicative only)
Concept:
Encounter-v4.0.1
Data element:
ContactType
Number of nights spent in the hospital
Technical specs
CSV column name:
TX_TTL_HOSPZ|0|MS_NGHT_HOSP
Required:
true
Reason for acute hospitalisation
Technical specs
CSV column name:
TX_TTL_HOSPZ|0|CD_REAS_ACUT_HOSPZ
Reference list:
ICD10CM_2019
Only when:
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
Encounter-v4.0.1
Data element:
Problem: ProblemName
Reason for planned hospitalization
Technical specs
CSV column name:
TX_TTL_HOSPZ|0|CD_REAS_PLND_HOSPZ
Only when:
Required:
true
Options
| Label | Value |
| G-tube placement | 1 |
| Sleep study | 2 |
| Scoliosis surgery | 3 |
| Hip surgery | 4 |
| Contracture surgery | 5 |
| Disease-modifying therapy | 6 |
| Checkup | 7 |
| Other | 8 |
| Unknown | 99 |
Mapping of the clinical building blocks (indicative only)
Concept:
Encounter-v4.0.1
Data element:
Procedure: ProcedureName
Please specify if other
Technical specs
CSV column name:
TX_TTL_HOSPZ|0|TX_REAS_PLND_HOSPZ_OTH
Only when:
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
Encounter-v4.0.1
Data element:
Procedure: ProcedureName
Was this hospitalisation classed as an SAE in relation to a disease-modifying therapy for SMA?
Technical specs
CSV column name:
TX_TTL_HOSPZ|0|CD_HOSPZ_SAE
Only when:
Required:
true
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
| Unknown | 99 |
To which disease-modifying therapy was this SAE related
Technical specs
CSV column name:
TX_TTL_HOSPZ|0|CD_DMT_SAE
Only when:
Required:
true
Options
| Label | Value |
| Spinraza (nusinersen) | 1 |
| Zolgensma (AVXS-101) | 2 |
| Evrysdi (risdiplam) | 3 |
| Other | 4 |
Please specify the other DMT related SAE
Technical specs
CSV column name:
TX_TTL_HOSPZ|0|TX_DMT_SAE_OTH
Only when:
Required:
true
Has the patient been diagnosed with comorbidities in the last 12 months (baseline) / since the last registry update (follow-up)?
Help
As data are collected yearly, please only consider the last 12 months in case of the first registration of a patient.
Technical specs
CSV column name:
CD_COMORB
Required:
true
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
| Unknown | 99 |
Validation
- Please complete the 'Comorbidity details' information (error)
Comorbidity details
This is a container for multiple answers. See the reference documentation for more details. Below you can find the information about the fields of the container
Element conditions
| Message | Expression |
| Comorbidity details: the start date cannot be in the future | typeof $['DT_START_COMORB'] === 'string'?new Date($['DT_START_COMORB']) |
| Comorbidity details: the start date cannot be before date of birth | typeof $.DT_START_COMORB === 'string' && typeof $$.document.target.value.patient_id.date_of_birth === 'string'?$.DT_START_COMORB >= $$.document.target.value.patient_id.date_of_birth:true |
| Comorbidity details: the start date cannot be after date of death | typeof $.DT_START_COMORB === 'string' && typeof $$.document.target.value.DT_DEATH === 'string'?$$.document.target.value.DT_DEATH >= $.DT_START_COMORB:true |
| Comorbidity details: the end date cannot be in the future | typeof $['DT_END_COMORB'] === 'string'?new Date($['DT_END_COMORB']) |
| Comorbidity details: the end date cannot be before date of birth | typeof $.DT_END_COMORB === 'string' && typeof $$.document.target.value.patient_id.date_of_birth === 'string'?$.DT_END_COMORB >= $$.document.target.value.patient_id.date_of_birth:true |
| Comorbidity details: the end date cannot be after date of death | typeof $.DT_END_COMORB === 'string' && typeof $$.document.target.value.DT_DEATH === 'string'?$$.document.target.value.DT_DEATH >= $.DT_END_COMORB:true |
| Comorbidity details: the end date cannot be before the start date | typeof $.DT_END_COMORB === 'string' && typeof $.DT_START_COMORB === 'string'?$.DT_END_COMORB >= $.DT_START_COMORB:true |
List items
Comorbidity details
Technical specs
CSV column name:
TX_TTL_COMORB_DETAIL|0|CD_COMORB_DETAIL
Reference list:
ICD10CM_2019
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
Problem-v4.4
Data element:
ProblemName
Start date
Technical specs
Format:
DD/MM/YYYY
CSV column name:
TX_TTL_COMORB_DETAIL|0|DT_START_COMORB
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
Problem-v4.4
Data element:
ProblemStartDate
Ongoing?
Technical specs
CSV column name:
TX_TTL_COMORB_DETAIL|0|CD_COMORB_ONGOING
Required:
true
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
End date
Technical specs
Format:
DD/MM/YYYY
CSV column name:
TX_TTL_COMORB_DETAIL|0|DT_END_COMORB
Only when:
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
Problem-v4.4
Data element:
ProblemEndDate
Was this comorbidity classed as an SAE in relation to a disease-modifying therapy for SMA?
Technical specs
CSV column name:
TX_TTL_COMORB_DETAIL|0|CD_COMORB_SAE
Only when:
Required:
true
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
| Unknown | 9 |
Mapping of the clinical building blocks (indicative only)
Concept:
Problem-v4.4
Data element:
ProblemName
To which disease-modifying therapy was this SAE related
Technical specs
CSV column name:
TX_TTL_COMORB_DETAIL|0|CD_DMT_COMORB_SAE
Only when:
Required:
true
Options
| Label | Value |
| Spinraza (nusinersen) | 1 |
| Zolgensma (AVXS-101) | 2 |
| Evrysdi (risdiplam) | 3 |
| Other | 4 |
Please specify the other DMT related SAE
Technical specs
CSV column name:
TX_TTL_COMORB_DETAIL|0|TX_DMT_COMORB_SAE_OTH
Only when:
Required:
true
16 Clinical research
Has the patient ever participated in a clinical trial?
Technical specs
CSV column name:
CD_CTR_PTCPD
Required:
true
Stable:
true
Options
| Label | Value |
| Currently | 3 |
| Previously | 2 |
| Never | 1 |
| Unknown | 99 |
Validation
- Please complete the 'Clinical trial episode' information (error)
Clinical trial episode
This is a container for multiple answers. See the reference documentation for more details. Below you can find the information about the fields of the container
Element conditions
| Message | Expression |
| Start date clinical trial drug cannot be before date of birth | typeof $.DT_DRUG_START === 'string' && typeof $$.document.target.value.patient_id.date_of_birth === 'string'?$.DT_DRUG_START >= $$.document.target.value.patient_id.date_of_birth:true |
| Stop date clinical trial drug cannot be before date of birth | typeof $.DT_DRUG_END === 'string' && typeof $$.document.target.value.patient_id.date_of_birth === 'string'?$.DT_DRUG_END >= $$.document.target.value.patient_id.date_of_birth:true |
| Start date clinical trial drug cannot be after date of death | typeof $.DT_DRUG_START=== 'string' && typeof $$.document.target.value.DT_DEATH === 'string'?$$.document.target.value.DT_DEATH >= $.DT_DRUG_START:true |
| Stop date clinical trial drug cannot be after date of death | typeof $.DT_DRUG_END=== 'string' && typeof $$.document.target.value.DT_DEATH === 'string'?$$.document.target.value.DT_DEATH >= $.DT_DRUG_END:true |
| Start date clinical trial drug cannot be in the future | typeof $.DT_DRUG_START === 'string'?new Date($.DT_DRUG_START) |
| Stop date clinical trial drug cannot be in the future | typeof $.DT_DRUG_END === 'string'?new Date($.DT_DRUG_END) |
| Start date clinical trial drug cannot be after stop date clinical drug | typeof $.DT_DRUG_START === 'string' && typeof $.DT_DRUG_END === 'string'?$.DT_DRUG_END >= $.DT_DRUG_START:true |
List items
Name of the clinical trial
Technical specs
CSV column name:
TX_TTL_CTR|0|TX_NAM_CTR
Required:
true
Name of the drug
Technical specs
CSV column name:
TX_TTL_CTR|0|TX_NAM_DRUG
Required:
true
Start date
Technical specs
Format:
DD/MM/YYYY
CSV column name:
TX_TTL_CTR|0|DT_DRUG_START
Required:
false
Ongoing?
Technical specs
CSV column name:
TX_TTL_CTR|0|CD_DRUG_CONTNG
Required:
true
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
Stop date
Technical specs
Format:
DD/MM/YYYY
CSV column name:
TX_TTL_CTR|0|DT_DRUG_END
Only when:
Required:
false
In addition to the BNMDR, is the patient currently part of another registry and/or natural history study?
Technical specs
CSV column name:
CD_OTH_REG_STDY
Required:
true
Stable:
true
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
| Unknown | 99 |
Name of registry or natural history study
Technical specs
CSV column name:
TX_REG_STDY
Default value:
Only when:
Required:
true
Stable:
true
17 Patient-reported outcomes (PRO)
Section help
Questions concerning ACTIVLIM are not applicable for patients younger than 6 years and patients older than 80 years
Did the patient fill out the ACTIVLIM questionnaire?
Technical specs
CSV column name:
CD_PAT_AL_QUES
Only when:
,
Required:
true
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
ACTIVLIM date
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_AL
Only when:
, ,
Required:
true
Validation
- ACTIVLIM date cannot be before date of birth (error)
- ACTIVLIM date cannot be in the future (error)
- ACTIVLIM date cannot be after date of death (error)
Everything easy or everything impossible
Technical specs
CSV column name:
CD_EVER_IMPOS
Only when:
, ,
Required:
false
Options
| Label | Value |
| Everything easy | 1 |
| Everything impossible | 2 |
| Not applicable | 3 |
Indicate the difficulty perceived for each of the following activities
Technical specs
Only when:
, ,
Required:
false
Questions
| Label | CSV column name |
| Putting on a T-shirt | CD_AL_PUT_TSHRT |
| Washing one's upper body | CD_AL_WSH_UPPR_BOD |
| Dressing one's lower body | CD_AL_DRES_LOW_BOD |
| Taking a shower | CD_AL_TAK_SHOWR |
| Sitting on the toilet | CD_AL_SIT_TOIL |
| Taking a bath | CD_AL_TAK_BAT |
| Walking downstairs | CD_AL_WALK_DWNSTR |
| Stepping out of a bath tub | CD_AL_STP_BAT |
| Opening a door | CD_AL_OPN_DOOR |
| Walking outdoors on level ground | CD_AL_WALK_OUTDR_GRND_LEVEL |
| Washing one's face | CD_AL_WSH_FACE |
| Hanging up a jacket on a hatstand | CD_AL_HAN_JACK_HATSTN |
| Wiping one's upper body | CD_AL_WIP_UPPR_BOD |
| Walking upstairs | CD_AL_GO_STAI |
| Carrying a heavy load | CD_AL_CARY_HVY_LOAD |
| Getting into a car | CD_AL_GET_CAR |
| Standing for a long time (± 10 min) | CD_AL_STAN_LON_TM_10_MIN |
| Walking more than one kilometer | CD_AL_WALK_MOR_1_KM |
| Closing a door | CD_AL_CLOS_DOOR |
| Hopping on one foot | CD_AL_HOP_1_FOOT |
| Putting on a backpack | CD_AL_PUT_BCKPCK |
| Running | CD_AL_RUN |
Answers
| Label | Value |
| Impossible | 1 |
| Difficult | 2 |
| Easy | 3 |
| No answer | 4 |
Was the Patient Global Impression of Severity (PGI-S) taken?
Help
This item should be captured once per patient; after that, Patient Global Impression of Improvement should be captured at each update.
Technical specs
CSV column name:
CD_PGIS
Required:
true
Stable:
true
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
PGI-S (Patient Global Impression of Severity) - Baseline only
Technical specs
CSV column name:
CD_PGIS_BL
Only when:
Required:
true
Stable:
true
Options
| Label | Value |
| Not at all affected | 1 |
| Mildy affected | 2 |
| Moderately affected | 3 |
| Severely affected | 4 |
Mapping of the clinical building blocks (indicative only)
Concept:
Measurement-v1.0
Data element:
MeasurementValue
Date of PGI-S score given
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_PGIS_BL
Only when:
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
Measurement-v1.0
Data element:
MeasurementDateStartTime
Validation
- PGI-S date cannot be in the future (error)
- PGI-S date cannot be after date of death (error)
- PGI-S date cannot be before date of birth (error)
Was the Patient Global Impression of Improvement (PGI-I) taken?
Help
This item should only be captured from patients/caregivers at follow-up (the item Patient Global Impression of Severity is used at baseline).
Technical specs
CSV column name:
CD_PGII
Required:
true
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
PGI-I (Patient Global Impression of Improvement) - follow-up only
Technical specs
CSV column name:
CD_PGII_FU
Only when:
Required:
true
Options
| Label | Value |
| Very much improved | 1 |
| Much improved | 2 |
| Minimally improved | 3 |
| No change | 4 |
| Minimally worse | 5 |
| Much worse | 6 |
| Very much worse | 7 |
Mapping of the clinical building blocks (indicative only)
Concept:
Measurement-v1.0
Data element:
MeasurementValue
Date of PGI-I score given
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_PGII_FU
Only when:
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
Measurement-v1.0
Data element:
MeasurementDateStartTime
Validation
- PGI-I date cannot be in the future (error)
- PGI-I date cannot be after date of death (error)
- PGI-I date cannot be before date of birth (error)
Was another PROM collected in the last 12 months (baseline) / since the last registry update (follow-up)?
Help
As data are collected yearly, please only consider the last 12 months in case of the first registration of a patient.
Technical specs
CSV column name:
CD_PROMS
Required:
true
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
Validation
- Please complete the 'PROM(s) collected' information (error)
PROM(s) collected
This is a container for multiple answers. See the reference documentation for more details. Below you can find the information about the fields of the container
List items
PROM name
Technical specs
CSV column name:
TX_TTL_PROMS_COLCT|0|TX_PROMS_NAME
Required:
true
PROM score
Technical specs
CSV column name:
TX_TTL_PROMS_COLCT|0|TX_PROMS_SCORE
Required:
true
PROM date
Technical specs
Format:
DD/MM/YYYY
CSV column name:
TX_TTL_PROMS_COLCT|0|DT_PROMS
Required:
true
18 Electrophysiology and biomarkers
Has the patient had a CMAP (Compound Muscle Action Potential) scan?
Technical specs
CSV column name:
CD_CMAP_SCAN
Required:
true
Stable:
true
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
| Unknown | 99 |
Mapping of the clinical building blocks (indicative only)
Concept:
Procedure-v5.2
Data element:
ProcedureType
Date of the most recent CMAP
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_RECNT_CMAP
Only when:
Required:
false
Stable:
true
Mapping of the clinical building blocks (indicative only)
Concept:
Procedure-v5.2
Data element:
ProcedureStartDate
Has the patient had a DEXA (Dual Energy X-ray Absorptiometry) scan?
Technical specs
CSV column name:
CD_DEXA_SCAN
Required:
true
Stable:
true
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
| Unknown | 99 |
Mapping of the clinical building blocks (indicative only)
Concept:
Procedure-v5.2
Data element:
ProcedureStartDate
Date of the most recent DEXA
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_RECNT_DEXA
Only when:
Required:
false
Stable:
true
Mapping of the clinical building blocks (indicative only)
Concept:
Procedure-v5.2
Data element:
ProcedureStartDate
Has the patient had any muscle imaging undertaken?
Technical specs
CSV column name:
CD_MUSC_IMAG
Required:
true
Stable:
true
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
| Unknown | 99 |
Mapping of the clinical building blocks (indicative only)
Concept:
Procedure-v5.2
Data element:
ProcedureType
Date of the most recent muscle imaging
Technical specs
Format:
DD/MM/YYYY
CSV column name:
DT_MUSC_IMAG
Only when:
Required:
false
Stable:
true
Mapping of the clinical building blocks (indicative only)
Concept:
Procedure-v5.2
Data element:
ProcedureStartDate