Surveillance of Infectious diseases in Children by paediatricians and GP - Congenital rubella syndrome (Pedisurv_Congenital_Rubella_Syndrome)
- Status: active
- How to create a CSV file for this data collection?
- Start date: 30/05/2017
1 General information
Section help
Congenitaal Rubella Syndroom Klinische criteria: een kind jonger dan één jaar of doodgeborene die aan ten minste twee van de onder (A) vermelde criteria voldoet OF die aan één criterium van categorie (A) en één criterium van categorie (B) voldoet. Categorie (A) : Cataract - Congenitaal glaucoom - Congenitale hartaandoening – Gehoorverlies - Pigmentaire retinopathie. Categorie (B): Purpura - Splenomegalie - Microcefalie - Mentale retardatie - Meningo-encefalitis - Radiolucente botziekte - Icterus binnen de 24 uur na de geboorte. Laboratoriumcriteria: een kind jonger dan één jaar of doodgeborene met minstens één van de volgende vier testen: (1) Positieve antistofrespons voor rubellavirus (IgM) (2) Detectie van nucleïnezuur van het rubellavirus (3) Isolatie van het rubellavirus uit een klinisch monster (4) Persistentie van rubella IgG in de leeftijd tussen 6 en 12 maanden. Epidemiologisch criterium: elke zuigeling van minder dan 1 jaar of doodgeborene waarvan de moeder tijdens de zwangerschap een door laboratoriumonderzoek bevestigde rubellavirusinfectie had.
NIHDI number of the reporting physician
Technical specs
CSV column name:
nihdi_number_of_the_reporting_physician
Length:
100
Reference list:
PHYSICIAN
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
be.en.hd.Caregiver
Data element:
CareGiverIdentificationNumber
Validation
- NIHDI number of the reporting physician: required field (warning) (warning)
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
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
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
Length:
50
Required:
false
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
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
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 of birth
Technical specs
Format:
DD/MM/YYYY
CSV column name:
patient_id|date_of_birth
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
be.en.hd.Patient
Data element:
DateOfBirth
Validation
- Date of birth cannot be after date of death (error)
- Mother date of birth cannot be after date of death (error)
- The date of birth cannot be in the future (error)
Sex
Technical specs
CSV column name:
patient_id|sex
Required:
noSSIN(Needed only if no national register number is entered)
Options
| Label | Value |
| Male | M |
| Female | F |
| Unknown | U |
Mapping of the clinical building blocks (indicative only)
Concept:
be.en.hd.Patient
Data element:
Gender
Validation
- Sex: required field (warning) (warning)
Place of residence
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:
Postcode
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
| 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
Mapping of the clinical building blocks (indicative only)
Concept:
be.en.hd.Patient
Data element:
DateOfDeath
Validation
- Date of birth cannot be after date of death (error)
- Date of first symptoms cannot be after date of death (error)
- Admission date cannot be after date of death (error)
- Discharge date cannot be after date of death (error)
- Date of first specimen collection cannot be after date of death (error)
- Date of laboratory result (first validated result) cannot be after date of death (error)
- Mother date of birth cannot be after date of death (error)
- When did the mother travel during pregnancy? cannot be after date of death (error)
- Date of the final classification cannot be after date of death (error)
Cause of death
Technical specs
CSV column name:
cause_of_death
Length:
200
Only when:
Required:
false
Mapping of the clinical building blocks (indicative only)
Concept:
be.en.hd.TransferConcern
Data element:
ProblemName
2 Clinical information
Was the child alive at birth?
Technical specs
CSV column name:
was_the_child_alive_at_birth
Required:
false
Options
| Label | Value |
| Yes | TRUE |
| No | FALSE |
Date of first symptoms
Technical specs
Format:
DD/MM/YYYY
CSV column name:
date_of_first_symptoms
Required:
false
Mapping of the clinical building blocks (indicative only)
Concept:
be.en.hd.TransferConcern
Data element:
ProblemStartDate
Validation
- Date of first symptoms cannot be after date of death (error)
- Date of first symptoms: required field (warning) (warning)
Symptoms
Help
Please complete all
Technical specs
Required:
false
Mapping of the clinical building blocks (indicative only)
Concept:
be.en.hd.TransferConcern
Data element:
ProblemType
Validation
- Date of first symptoms cannot be after date of death (error)
- Date of first symptoms: required field (warning) (warning)
Questions
| Label | CSV column name |
| Cataract | cataract |
| Congenital glaucoma | congenital_glaucoma |
| Congenital heart disease | congenital_heart_disease |
| Hearing loss | hearing_loss |
| Pigmentary retinopathy | pigmentary_retinopathy |
| Purpura | purpura |
| Splenomegaly | splenomegaly |
| Microcephaly | microcephaly |
| Developmental delay | developmental_delay |
| Meningoencephalitis | meningoencephalitis |
| Radiolucent bone disease | radiolucent_bone_disease |
| Jaundice within 24 hours after birth | jaundice_within_24_hours_after_birth |
Answers
| Label | Value |
| Yes | 1 |
| No | 0 |
| Unknown | 9 |
3 Hospitalisation
Admission date
Technical specs
Format:
DD/MM/YYYY
CSV column name:
admission_date
Required:
false
Mapping of the clinical building blocks (indicative only)
Concept:
be.en.hd.Contact
Data element:
StartDateTime
Validation
- Admission date cannot be after discharge date (error)
- Admission date cannot be after date of death (error)
Discharge date
Technical specs
Format:
DD/MM/YYYY
CSV column name:
discharge_date
Required:
false
Mapping of the clinical building blocks (indicative only)
Concept:
be.en.hd.Contact
Data element:
EndDateTime
Validation
- Admission date cannot be after discharge date (error)
- Discharge date cannot be after date of death (error)
4 Laboratory investigation
Was a specimen collected?
Technical specs
CSV column name:
was_a_specimen_collected
Required:
false
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
| Unknown | 9 |
Mapping of the clinical building blocks (indicative only)
Concept:
be.en.hd.TransferLaboratoryResult
Data element:
DrawingProcedure
Validation
- Was a specimen collected?: required field (warning) (warning)
- Date of first specimen collection: required field (warning) (warning)
Type of specimen
Technical specs
CSV column name:
type_of_specimen
Only when:
Required:
false
Options
| Label | Value |
| Serum | 193640 |
| Saliva swab | 119342007 |
| Nasopharyngeal swab | 585000 |
| Urine | 225750 |
| Cerebrospinal fluid | 584500 |
| Other | other |
Mapping of the clinical building blocks (indicative only)
Concept:
be.en.hd.TransferLaboratoryResult
Data element:
SpecimenMaterial
Nested option fields
- When other Is selected:text
Specify
Technical specs
CSV column name:
type_of_specimen|specify
Length:
200
Required:
false
Mapping of the clinical building blocks (indicative only)
Concept:
be.en.hd.TransferLaboratoryResult
Data element:
SpecimenMaterial
Date of first specimen collection
Technical specs
Format:
DD/MM/YYYY
CSV column name:
date_of_first_specimen_collection
Only when:
Required:
false
Mapping of the clinical building blocks (indicative only)
Concept:
be.en.hd.TransferLaboratoryResult
Data element:
DrawingDateTime
Validation
- Date of first specimen collection cannot be after date of death (error)
- Date of first specimen collection cannot be after Date of laboratory result (first validated result) (error)
- Date of first specimen collection: required field (warning) (warning)
Rubella IgM
Technical specs
CSV column name:
rubella_igm
Only when:
Required:
true
Options
| Label | Value |
| Not tested | 2 |
| Positive | 1 |
| Negative | 0 |
| Equivocal | 3 |
| Unknown | 9 |
Mapping of the clinical building blocks (indicative only)
Concept:
be.en.hd.TransferLaboratoryResult
Data element:
Result
Sustained IgG level
Help
Sustained IgG level on at least 2 occasions between 6 and 12 months of age
Technical specs
CSV column name:
sustained_igg_level
Only when:
Required:
true
Options
| Label | Value |
| Not tested | 2 |
| Yes | 1 |
| No | 0 |
| Unknown | 9 |
Mapping of the clinical building blocks (indicative only)
Concept:
be.en.hd.TransferLaboratoryResult
Data element:
Result
Rubella PCR
Technical specs
CSV column name:
rubella_pcr
Only when:
Required:
true
Options
| Label | Value |
| Not tested | 2 |
| Positive | 1 |
| Negative | 0 |
| Unknown | 9 |
| Not feasible | 8 |
Mapping of the clinical building blocks (indicative only)
Concept:
be.en.hd.TransferLaboratoryResult
Data element:
Result
Nested option fields
- When 1 Is selected:choice
Genotype
Technical specs
CSV column name:
rubella_pcr|genotype
Required:
true
Options
Label Value 1A 1a 1B 1b 1C 1c 1D 1d 1E 1e 1F 1f 1G 1g 1H 1h 1I 1i 1J 1j 2A 2a 2B 2b 2C 2c Unknown 9 Mapping of the clinical building blocks (indicative only)
Concept:
be.en.hd.TransferLaboratoryResult
Data element:
Result
Date of laboratory result (first validated result)
Technical specs
Format:
DD/MM/YYYY
CSV column name:
date_of_laboratory_result_first_validated_result
Only when:
Required:
false
Mapping of the clinical building blocks (indicative only)
Concept:
be.en.hd.TransferLaboratoryResult
Data element:
TestDateTime
Validation
- Date of laboratory result (first validated result) cannot be after date of death (error)
- Date of first specimen collection cannot be after Date of laboratory result (first validated result) (error)
5 Information on the mother
National registry ID of the mother
Help
Please encode a social security identification number (SSIN). Please note that the mother ID is always pseudonymised before being transferred to Healthdata.
Technical specs
CSV column name:
patient_id_mother
Required:
false
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 mother ID is always pseudonymised before being transferred to Healthdata.
Mother internal 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_mother|internal_patient_id
Required:
false
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_mother|generated
Required:
false
Options
| Label | Value |
| Yes | TRUE |
| No | FALSE |
Mother 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_mother|name
Required:
noSSIN(Needed only if no national register number is entered)
Mother 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_mother|first_name
Required:
noSSIN(Needed only if no national register number is entered)
Mother date of birth
Technical specs
Format:
DD/MM/YYYY
CSV column name:
patient_id_mother|date_of_birth
Required:
noSSIN(Needed only if no national register number is entered)
Validation
- Mother date of birth cannot be after date of death (error)
Mother sex
Technical specs
CSV column name:
patient_id_mother|sex
Default value:
F
Required:
noSSIN(Needed only if no national register number is entered)
Options
| Label | Value |
| Male | M |
| Female | F |
| Unknown | U |
Mother place of residence
Technical specs
CSV column name:
patient_id_mother|place_of_residence
Reference list:
POSTAL_CODE
Required:
false
Mother deceased?
Technical specs
CSV column name:
patient_id_mother|deceased
Required:
false
Options
| Label | Value |
| Yes | TRUE |
| No | FALSE |
Mother date of death
Technical specs
Format:
DD/MM/YYYY
CSV column name:
patient_id_mother|date_of_death
Only when:
Required:
false
Validation
- Mother date of birth cannot be after date of death (error)
Place of child birth
Help
Name hospital or maternity, at home, ...
Technical specs
CSV column name:
place_of_child_birth
Length:
100
Required:
false
Mapping of the clinical building blocks (indicative only)
Concept:
be.en.hd.Contact
Data element:
Location::HealthcareProvider
Was rubella laboratory-confirmed in the mother during the pregnancy?
Technical specs
CSV column name:
was_rubella_laboratoryconfirmed_in_the_mother_during_the_pregnancy
Required:
false
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
| Unknown | 9 |
Mapping of the clinical building blocks (indicative only)
Concept:
be.en.hd.TransferLaboratoryResult
Data element:
Test
Validation
- Was rubella laboratory-confirmed in the mother during the pregnancy?: required field (warning) (warning)
Did the mother travel during pregnancy?
Technical specs
CSV column name:
did_the_mother_travel_during_pregnancy
Required:
true
Options
| Label | Value |
| Yes | 1 |
| No | 0 |
| Unknown | 9 |
Validation
- When did the mother travel during pregnancy? cannot be after date of death (error)
- When did the mother travel during pregnancy?: required field (warning) (warning)
- Where did the mother travel during pregnancy?: required field (warning) (warning)
Nested option fields
- When 1 Is selected:date
When?
Technical specs
Format:
DD/MM/YYYY
CSV column name:
did_the_mother_travel_during_pregnancy|when
Required:
false
textWhere?
Technical specs
CSV column name:
did_the_mother_travel_during_pregnancy|where
Length:
200
Reference list:
COUNTRY
Required:
false
choiceMonth of pregnancy?
Technical specs
CSV column name:
did_the_mother_travel_during_pregnancy|month_of_pregnancy
Required:
false
Options
Label Value 1 1 2 2 3 3 4 4 5 5 6 6 7 7 8 8 9 9
6 Final classification
Date of the final classification
Technical specs
Format:
DD/MM/YYYY
CSV column name:
date_of_the_final_classification
Required:
false
Validation
- Date of the final classification cannot be after date of death (error)
Final classification
Technical specs
CSV column name:
final_classification
Required:
false
Options
| Label | Value |
| Probable case | 1 |
| Confirmed case | 2 |
Validation
- Date of the final classification cannot be after date of death (error)