Data Collection Definitions

Creutzfeldt-Jakob Disease (CJD)

  • Start date: 15/12/2019
Full viewCSV column namesValidation rulesReference listsComputed expressionsAdditional informationCSV extract

1 General information

Section help

If you move your cursor over the i, more information on how to complete the information will appear

text

Name of the person who completed the questionnaire

Technical specs

CSV column name:

name_of_the_person_who_completed_the_questionnaire

Length:

50

Required:

false

text

NIHDI of the physician who performed the autopsy

Technical specs

CSV column name:

nihdi_of_the_physician_who_performed_the_autopsy

Length:

50

Reference list:

PHYSICIAN

Required:

true

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Caregiver

Data element:

CareGiverIdentificationNumber

text

NIHDI of neurologist or GP who could give complementary clinical information

Technical specs

CSV column name:

nihdi_of_neurologist_or_gp_who_could_give_complementary_clinical_information

Length:

50

Reference list:

PHYSICIAN

Required:

false

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Caregiver

Data element:

CareGiverIdentificationNumber

choice

Type of record

Technical specs

CSV column name:

type_of_record

Required:

false

Options
LabelValue
Biopt1
Autopsy2
Other3
Validation
  • The autopsy date cannot be in the future (error)
  • The biopt date cannot be in the future (error)
Nested option fields
  • When 1 Is selected:
    date

    Biopt date

    Technical specs

    Format:

    DD/MM/YYYY

    CSV column name:

    type_of_record|biopt_date

    Required:

    false

    Mapping of the clinical building blocks (indicative only)

    Concept:

    be.en.hd.TransferProcedure

    Data element:

    ProcedureStartDate

  • When 2 Is selected:
    date

    Autopsy date

    Technical specs

    Format:

    DD/MM/YYYY

    CSV column name:

    type_of_record|autopsy_date

    Required:

    false

    Mapping of the clinical building blocks (indicative only)

    Concept:

    be.en.hd.TransferProcedure

    Data element:

    ProcedureStartDate

2 Demographic data - patient

patient identificator

National Registry ID

Help

In case the National Registry ID is not known, please fill in the name, first name and date of birth. Then tick the box that appears and a unique patient code will automatically be created.

Technical specs

CSV column name:

patient_id

Required:

true

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Patient

Data element:

PatientIdentificationNumber

Validation

The validity of the national register number is checked with the mod97 check.

Fields
Section help

In case the National Registry ID is not known, please fill in the name, first name and date of birth. Then tick the box that appears and a unique patient code will automatically be created.

text

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

Length:

50

Required:

false

boolean

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
LabelValue
YesTRUE
NoFALSE
text

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

Length:

50

Required:

noSSIN(Needed only if no national register number is entered)

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Patient

Data element:

LastName

text

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

Length:

50

Required:

noSSIN(Needed only if no national register number is entered)

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Patient

Data element:

FirstNames

date

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)

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Patient

Data element:

DateOfBirth

Validation
  • The date of birth cannot be in the future (error)
  • Date of birth cannot be after date of death (error)
  • The date of birth cannot be after the start year of living in UK (error)
choice

Sex

Technical specs

CSV column name:

patient_id|sex

Required:

noSSIN(Needed only if no national register number is entered)

Options
LabelValue
FemaleF
MaleM
UnknownU
Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Patient

Data element:

Gender

text

Place of residence

Help

In case the place of residence is unknown, please indicate 999. In case the place of residence is abroad, please indicate 9999.

Technical specs

CSV column name:

patient_id|place_of_residence

Length:

5

Reference list:

POSTAL_CODE

Required:

false

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Patient

Data element:

Place of residence

Validation
  • The place of residence contains a Belgian postal code, but the country of residence is different than Belgium (error)
  • For inhabitants of Belgium (the country of residence equal to 'BE'), the place of residence should contain a valid Belgian postal code different than 999 or 9999 (error)
boolean

Deceased?

Technical specs

CSV column name:

patient_id|deceased

Required:

false

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Patient

Data element:

DeathIndicator

Options
LabelValue
YesTRUE
NoFALSE
date

Date of death

Technical specs

Format:

DD/MM/YYYY

CSV column name:

patient_id|date_of_death

Only when:

Required:

false

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Patient

Data element:

DateOfDeath

Validation
  • The date of death cannot be in the future (error)
  • Date of birth cannot be after date of death (error)
text

Country of residence

Help

In case the country of residence is unknown, please indicate 999.

Technical specs

CSV column name:

country_of_residence

Length:

50

Reference list:

COUNTRY

Required:

false

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Patient

Data element:

Country

Validation
  • The place of residence contains a Belgian postal code, but the country of residence is different than Belgium (error)
  • For inhabitants of Belgium (the country of residence equal to 'BE'), the place of residence should contain a valid Belgian postal code different than 999 or 9999 (error)
text

Country of birth

Technical specs

CSV column name:

country_of_birth

Length:

50

Reference list:

COUNTRY

Required:

false

text

Residence at onset

Technical specs

CSV column name:

residence_at_onset

Length:

5

Reference list:

POSTAL_CODE

Required:

false

Validation
  • The residence at onset contains a Belgian postal code, but the country at onset is different than Belgium (error)
  • For inhabitants of Belgium (the country at onset equal to 'BE'), the residence at onset should contain a valid Belgian postal code different than 999 or 9999 (error)
text

Country at onset

Technical specs

CSV column name:

country_at_onset

Length:

50

Reference list:

COUNTRY

Required:

false

Validation
  • The residence at onset contains a Belgian postal code, but the country at onset is different than Belgium (error)
  • For inhabitants of Belgium (the country at onset equal to 'BE'), the residence at onset should contain a valid Belgian postal code different than 999 or 9999 (error)
text

Nationality

Help

In case nationality is unknown, please indicate 999.

Technical specs

CSV column name:

nationality

Length:

50

Reference list:

COUNTRY

Required:

false

3 Clinical presentation

number

Disease duration (months)

Technical specs

CSV column name:

disease_duration_months

Required:

false

Validation
  • The minimum value is 0 (error)
multichoice

Symptoms at onset

Technical specs

CSV column name:

symptom_at_onset

Required:

false

Options
LabelValue
Rapidly progressive dementiarapidly_progressive_dementia
Isolated visual symptomsisolated_visual_symptoms
Pure psychiatric onsetpure_psychiatric_onset
Slowly progressive dementiaslowly_progressive_dementia
Pure cerebellar onsetpure_cerebellar_onset
Extra pyramidal onsetextra_pyramidal_onset
Stroke-like onsetstrokelike_onset
Sensory symptoms at onsetsensory_symptoms_at_onset
Otherother
Unknownmissing
Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.TransferConcern

Data element:

ProblemType

Validation
  • Symptoms at onset: the option 'Unknown' cannot be combined with other options (error)
questionnaire

Clinical evolution

Technical specs

Required:

false

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.TransferConcern

Data element:

ProblemName

Questions
LabelCSV column name
Progressive dementiaprogressive_dementia
Myoclonusmyoclonus
Visual disturbancevisual_disturbance
Cerebellar disturbancecerebellar_disturbance
Pyramidal featurepyramidal_feature
Extra pyramidal featureextra_pyramidal_feature
Akinetic mutismakinetic_mutism
Answers
LabelValue
Present1
Absent2
Unknown3

4 Diagnostic

Section help

Please indicate whether the diagnostic procedure was performed, not performed or unknown. In case the procedure was performed, additional information about the results of the procedure can be given below.

questionnaire

Diagnostic

Technical specs

Required:

false

Questions
LabelCSV column name
MRImri
Prp analysisprp_analysis
RT-QuICrtquic
EEGeeg
14-3-3 protein in CSFprotein_kinase_c_inhibitor_protein_1_in_csf
Answers
LabelValue
Performed1
Not performed2
Unknown3
multichoice

Result MRI

Technical specs

CSV column name:

result_mri

Only when:

Required:

false

Options
LabelValue
Normal1
Non specific abnormalities2
Atrophy3
High signal in caudate lobe and putamen4
High signal in posterior thalamus greater than other areas5
High signal in at least 2 cortical regions (temporal, parietal, occipital)6
Bilateral pulvinar high signal7
Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.TransferTextResult

Data element:

TextResult

choice

Result RT-QuIC

Technical specs

CSV column name:

result_rtquic

Only when:

Required:

false

Options
LabelValue
Positive1
Negative2
Inconclusive3
Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.TransferLaboratoryResult

Data element:

Result

multichoice

Prp analysis result

Technical specs

CSV column name:

prp_analysis_result

Only when:

Required:

false

Options
LabelValue
Mutation analysismutation_analysis
Codon 129 analysiscodon_129_analysis
Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.TransferLaboratoryResult

Data element:

Result

Nested option fields
  • When mutation_analysis Is selected:
    choice

    Mutation analysis

    Technical specs

    CSV column name:

    prp_analysis_result|mutation_analysis_1

    Required:

    false

    Options
    LabelValue
    Mutation detected1
    No mutation detected2
    Mapping of the clinical building blocks (indicative only)

    Concept:

    be.en.hd.TransferLaboratoryResult

    Data element:

    Result

    Nested option fields
    • When 1 Is selected:
      text

      Specify

      Technical specs

      CSV column name:

      prp_analysis_result|mutation_analysis_1|specify

      Length:

      100

      Required:

      false

  • When codon_129_analysis Is selected:
    choice

    Codon 129 analysis

    Technical specs

    CSV column name:

    prp_analysis_result|codon_129_analysis_1

    Required:

    false

    Options
    LabelValue
    Met-Val1
    Met-Met2
    Val-Val3
    Mapping of the clinical building blocks (indicative only)

    Concept:

    be.en.hd.TransferLaboratoryResult

    Data element:

    Result

choice

Result EEG

Technical specs

CSV column name:

result_eeg

Only when:

Required:

false

Options
LabelValue
Typical1
Not typical2
Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.TransferTextResult

Data element:

TextResult

choice

14-3-3 protein in CSF

Technical specs

CSV column name:

protein_kinase_c_inhibitor_protein_1_in_csf_1

Only when:

Required:

false

Options
LabelValue
Positive1
Negative2
Equivocal result3
Technically uninterpretable4
Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.TransferLaboratoryResult

Data element:

Result

5 Final diagnosis

choice

Final diagnosis

Technical specs

CSV column name:

final_diagnosis_1

Required:

false

Options
LabelValue
Sporadic CJD1
Familial CJD2
Iatrogenic CJD3
Variant CJD4
Other5
Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.TransferConcern

Data element:

ProblemName

Nested option fields
  • When 1 Is selected:
    choice

    Sporadic CJD

    Technical specs

    CSV column name:

    final_diagnosis_1|sporadic_cjd_1

    Required:

    false

    Options
    LabelValue
    Probable1
    Confirmed2
  • When 2 Is selected:
    choice

    Familial CJD

    Technical specs

    CSV column name:

    final_diagnosis_1|familial_cjd

    Required:

    false

    Options
    LabelValue
    Probable1
    Confirmed2
  • When 3 Is selected:
    text

    Source of infection

    Technical specs

    CSV column name:

    final_diagnosis_1|source_of_infection

    Length:

    3

    Required:

    false

    choice

    Iatrogenic CJD

    Technical specs

    CSV column name:

    final_diagnosis_1|iatrogenic_cjd_1

    Required:

    false

    Options
    LabelValue
    Probable1
    Confirmed2
  • When 4 Is selected:
    choice

    Variant CJD

    Technical specs

    CSV column name:

    final_diagnosis_1|variant_cjd

    Required:

    false

    Options
    LabelValue
    Probable1
    Confirmed2
  • When 5 Is selected:
    text

    Specify other

    Technical specs

    CSV column name:

    final_diagnosis_1|specify_other

    Length:

    100

    Required:

    false

multiline

Additional comments on diagnosis

Technical specs

CSV column name:

additional_comments_on_diagnosis

Length:

500

Required:

false

6 Samples

Section help

Please indicate which samples have been collected and stored.

questionnaire

Samples

Technical specs

Required:

false

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.TransferLaboratoryResult

Data element:

SpecimenMaterial

Questions
LabelCSV column name
Frozen brain tissuefrozen_brain_tissue
Formalin fixed brain tissueformalin_fixed_brain_tissue
DNAdna
Serumserum
CSFcsf
Answers
LabelValue
Yes1
No2
Unknown3

7 Specific risk factors

choice

Has the patient ever received a transfusion?

Technical specs

CSV column name:

has_the_patient_ever_received_a_transfusion

Required:

false

Options
LabelValue
Yes1
No2
Unknown3
Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.TransferProcedure

Data element:

ProcedureType

list

Whole blood

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
MessageExpression
The whole blood date cannot be in the futuretypeof $.whole_blood === 'string'?new Date($.whole_blood)
Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.TransferProcedure

Data element:

ProcedureType

List items
date

Whole blood

Technical specs

Format:

DD/MM/YYYY

CSV column name:

whole_blood|whole_blood

Required:

false

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.TransferProcedure

Data element:

ProcedureStartDate

list

Platelets

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
MessageExpression
The platelet date cannot be in the futuretypeof $.platelets === 'string'?new Date($.platelets)
Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.TransferProcedure

Data element:

ProcedureType

List items
date

Platelets

Technical specs

Format:

DD/MM/YYYY

CSV column name:

platelets|platelets

Required:

false

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.TransferProcedure

Data element:

ProcedureStartDate

list

Red blood cells concentrates

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
MessageExpression
The red blood cells concentrate date cannot be in the futuretypeof $.red_blood_cells_concentrates === 'string'?new Date($.red_blood_cells_concentrates)
Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.TransferProcedure

Data element:

ProcedureType

List items
date

Red blood cells concentrates

Technical specs

Format:

DD/MM/YYYY

CSV column name:

red_blood_cells_concentrates|red_blood_cells_concentrates

Only when:

Required:

false

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.TransferProcedure

Data element:

ProcedureStartDate

list

White blood cells

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
MessageExpression
The white blood cells date cannot be in the futuretypeof $.white_blood_cells === 'string'?new Date($.white_blood_cells)
Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.TransferProcedure

Data element:

ProcedureType

List items
date

White blood cells

Technical specs

Format:

DD/MM/YYYY

CSV column name:

white_blood_cells|white_blood_cells

Only when:

Required:

false

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.TransferProcedure

Data element:

ProcedureStartDate

list

Stable blood products (albumine, immunoglobulines, clottingfactors)

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
MessageExpression
The stable blood products date cannot be in the futuretypeof $.stable_blood_products_albumine_immunoglobulines_clottingfactors === 'string'?new Date($.stable_blood_products_albumine_immunoglobulines_clottingfactors)
Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.TransferProcedure

Data element:

ProcedureType

List items
date

Stable blood products (albumine, immunoglobulines, clottingfactors)

Technical specs

Format:

DD/MM/YYYY

CSV column name:

stable_blood_products_albumine_immunoglobulines_clottingfactors|stable_blood_products_albumine_immunoglobulines_clottingfactors

Only when:

Required:

false

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.TransferProcedure

Data element:

ProcedureStartDate

choice

Has the patient ever been a blood donor?

Technical specs

CSV column name:

has_the_patient_ever_been_a_blood_donor

Required:

false

Options
LabelValue
Yes1
No2
Unknown3
Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.TransferProcedure

Data element:

ProcedureType

text

Years of blood donation

Technical specs

CSV column name:

years_of_blood_donation

Length:

100

Only when:

Required:

false

choice

Has the patient ever lived in UK?

Technical specs

CSV column name:

has_the_patient_ever_lived_in_uk

Required:

false

Options
LabelValue
Yes1
No2
Unknown3
Validation
  • The start year of living in UK consists of 4 numbers (error)
  • The date of birth cannot be after the start year of living in UK (error)
  • The start year of living in UK cannot be in the future (error)
  • The start year of living in UK needs to be after 1900 (error)
Nested option fields
  • When 1 Is selected:
    number

    Start year of living in UK

    Technical specs

    CSV column name:

    has_the_patient_ever_lived_in_uk|start_year_of_living_in_uk

    Length:

    4

    Required:

    false

    text

    How long?

    Technical specs

    CSV column name:

    has_the_patient_ever_lived_in_uk|how_long

    Length:

    10

    Required:

    false

choice

Has the patient ever had endoscopy?

Technical specs

CSV column name:

has_the_patient_ever_had_endoscopy

Required:

false

Options
LabelValue
Yes1
No2
Unknown3
Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.TransferProcedure

Data element:

ProcedureType

Validation
  • The date of endoscopy cannot be in the future (error)
Nested option fields
  • When 1 Is selected:
    text

    Which type

    Technical specs

    CSV column name:

    has_the_patient_ever_had_endoscopy|which_type

    Length:

    100

    Required:

    false

    Mapping of the clinical building blocks (indicative only)

    Concept:

    be.en.hd.TransferProcedure

    Data element:

    ProcedureType

    date

    When

    Technical specs

    Format:

    DD/MM/YYYY

    CSV column name:

    has_the_patient_ever_had_endoscopy|when

    Required:

    false

    Mapping of the clinical building blocks (indicative only)

    Concept:

    be.en.hd.TransferProcedure

    Data element:

    ProcedureStartDate

    text

    Which hospital

    Technical specs

    CSV column name:

    has_the_patient_ever_had_endoscopy|which_hospital

    Length:

    100

    Reference list:

    RIZIV

    Required:

    false

    Mapping of the clinical building blocks (indicative only)

    Concept:

    be.en.hd.HealthcareProvider

    Data element:

    OrganizationName

choice

Has the patient ever had surgery?

Technical specs

CSV column name:

has_the_patient_ever_had_surgery

Required:

false

Options
LabelValue
Yes1
No2
Unknown3
Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.TransferProcedure

Data element:

ProcedureType

Validation
  • The date of surgery cannot be in the future (error)
Nested option fields
  • When 1 Is selected:
    text

    Which type

    Technical specs

    CSV column name:

    has_the_patient_ever_had_surgery|which_type

    Length:

    100

    Required:

    false

    Mapping of the clinical building blocks (indicative only)

    Concept:

    be.en.hd.TransferProcedure

    Data element:

    ProcedureType

    date

    When

    Technical specs

    Format:

    DD/MM/YYYY

    CSV column name:

    has_the_patient_ever_had_surgery|when

    Required:

    false

    Mapping of the clinical building blocks (indicative only)

    Concept:

    be.en.hd.TransferProcedure

    Data element:

    ProcedureStartDate

    text

    Which hospital

    Technical specs

    CSV column name:

    has_the_patient_ever_had_surgery|which_hospital

    Length:

    100

    Reference list:

    RIZIV

    Required:

    false

    Mapping of the clinical building blocks (indicative only)

    Concept:

    be.en.hd.HealthcareProvider

    Data element:

    OrganizationName

multiline

Other risk factors or additional information

Technical specs

CSV column name:

other_risk_factors_or_additional_information

Length:

500

Required:

false