Data Collection Definitions

Belgian Cerebral Palsy Registry (BeCPR)

  • Start date: 24/02/2021
  • End date creation: 17/12/2023
  • End date submission: 17/12/2023
  • End date comments: 17/12/2023
Full viewCSV column namesValidation rulesReference listsComputed expressionsAdditional informationCSV extract

1 Patient identification

text

Identification number of a case

Technical specs

CSV column name:

ID

Required:

true

patient identificator

National Registry ID

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.

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

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

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

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)
  • The date of birth need to be after 1900 (error)
  • The date of birth cannot be after the date of death (error)
  • The date of birth cannot be before 01/01/1970 (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
UnkownU
Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Patient

Data element:

Gender

text

Place of residence

Technical specs

CSV column name:

patient_id|place_of_residence

Reference list:

POSTAL_CODE

Only when:

Required:

false

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Patient

Data element:

Postcode

boolean

Deceased?

Technical specs

CSV column name:

patient_id|deceased

Required:

true

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:

true

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)
  • The date of birth cannot be after the date of death (error)
choice

Mother’s permanent place of residence at time of birth

Technical specs

CSV column name:

CD_MOTH_RESDC_BIRTH

Required:

true

Options
LabelValue
Belgium1
Outside of Belgium2
Unknown99
choice

Parents or guardians place of residence at time of registration of the case

Technical specs

CSV column name:

CD_PAR_RESDC_REGN

Required:

true

Options
LabelValue
Belgium1
Outside of Belgium2
Unknown99
Not collected999
choice

Gestational age (in weeks)

Technical specs

CSV column name:

CD_GA

Required:

true

Options
LabelValue
Known1
Unknown99
number

Specify the gestational age (in completed weeks)

Technical specs

CSV column name:

MS_GA

Only when:

Required:

false

Validation
  • Gestational age: must be an integer (error)
  • 'Gestational age lower than 32 weeks' cannot be combined with 'Admission in a neonatal intensive care unit: no' (warning)
  • The minimum value is 22 weeks (error)
  • The maximum value is 43 weeks (error)
choice

Multiple birth

Technical specs

CSV column name:

CD_MULT_BIRTH

Required:

true

Options
LabelValue
Singleton1
Twin2
Triplets3
Quadruplets4
Quintuplets5
Sextuplets6
Septuplets7
≥ 28
Unknown99
Not collected999
Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Patient

Data element:

MultipleBirthIndicator

Validation
  • 'Multiple birth: twin' cannot be combined with ‘Birth order: third, fourth, fifth, sixth or seventh infant’ (error)
  • 'Multiple birth: triplets' cannot be combined with ‘Birth order: fourth, fifth, sixth or seventh infant’ (error)
  • 'Multiple birth: quadruplets' cannot be combined with ‘Birth order: fifth, sixth or seventh infant’ (error)
  • 'Multiple birth: quintuplets' cannot be combined with ‘Birth order: sixth or seventh infant’ (error)
  • 'Multiple birth: sextuplets' cannot be combined with ‘Birth order: seventh infant’ (error)
choice

Birth weight singleton (g)

Technical specs

CSV column name:

CD_BIRTH_WGHT_SNGL

Only when:

Required:

true

Options
LabelValue
Known1
Unknown99
Validation
  • 'Birth weight lower than 1500g' cannot be combined with 'Admission in a neonatal intensive care unit: no' (warning)
Nested option fields
  • When 1 Is selected:
    number

    If known, please specify the birth weight (g)

    Technical specs

    CSV column name:

    CD_BIRTH_WGHT_SNGL|MS_BIRTH_WGHT

    Required:

    true

    Mapping of the clinical building blocks (indicative only)

    Concept:

    be.en.hd.BodyWeight

    Data element:

    WeightValue

choice

Birth weight (g)

Technical specs

CSV column name:

CD_BIRTH_WGHT

Only when:

Required:

true

Options
LabelValue
Known1
Unknown99
Validation
  • 'Birth weight lower than 1500g' cannot be combined with 'Admission in a neonatal intensive care unit: no' (warning)
Nested option fields
  • When 1 Is selected:
    number

    If known, please specify the birth weight (g)

    Technical specs

    CSV column name:

    CD_BIRTH_WGHT|MS_BIRTH_WGHT

    Required:

    true

choice

Birth order

Technical specs

CSV column name:

CD_BIRTH_ORD

Only when:

Required:

true

Options
LabelValue
First infant1
Second infant2
Third infant3
Fourth infant4
Fifth infant5
Sixth infant6
7th infant7
Unknown99
Not collected999
Validation
  • 'Multiple birth: twin' cannot be combined with ‘Birth order: third, fourth, fifth, sixth or seventh infant’ (error)
  • 'Multiple birth: triplets' cannot be combined with ‘Birth order: fourth, fifth, sixth or seventh infant’ (error)
  • 'Multiple birth: quadruplets' cannot be combined with ‘Birth order: fifth, sixth or seventh infant’ (error)
  • 'Multiple birth: quintuplets' cannot be combined with ‘Birth order: sixth or seventh infant’ (error)
  • 'Multiple birth: sextuplets' cannot be combined with ‘Birth order: seventh infant’ (error)
choice

Maternal age at birth

Technical specs

CSV column name:

CD_MOTH_AGE_BIRTH

Required:

true

Options
LabelValue
Known1
Unknown99
Not collected999
number

Specify the maternal age at birth (years)

Technical specs

CSV column name:

MS_MOTH_AGE_BIRTH

Only when:

Required:

false

Validation
  • The minimum maternal age at birth is 12 years (error)
  • The maximum maternal age at birth is 60 years (error)
choice

Parity

Help

Parity definition: Number of previous pregnancies resulting in either live birth or stillbirth (as defined in country of register). Excludes miscarriages and therapeutic abortions.

Technical specs

CSV column name:

CD_PAR

Required:

true

Options
LabelValue
None previous delivery1
1 previous delivery2
2 previous deliveries or more3
Unknown99
Not collected999
choice

Delivery mode

Technical specs

CSV column name:

CD_DLV_MODE

Required:

true

Options
LabelValue
Vaginal delivery1
Caesarean section2
Caesarean section elective/before labour3
Caesarean section emergency/during labour4
Unknown99
Not collected999
choice

Place of birth

Help

This item describes the number of total annual births in the maternity unit where the CP child was born.

Technical specs

CSV column name:

CD_PLC_BIRTH

Required:

true

Options
LabelValue
Home or travel or hospitalisation unit other than maternity1
Maternity unit 1-4992
Maternity unit 500-9993
Maternity unit 1000-14994
Maternity unit 1500-19995
Maternity unit 2000-39996
Maternity unit 4000+7
Unknown99
Not collected999

2 Healthcare Professional

text

Name of the centre

Not to be included in the CSV.

Technical specs

CSV column name:

TX_INSTAL_ID

Length:

100

Computed:

Required:

true

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.HealthcareProvider

Data element:

HealthcareProviderIdentificationNumber

text

RIZIV/INAMI-code of the treating physician

Technical specs

CSV column name:

CD_RIZIV_TREAT_PHYS

Length:

100

Reference list:

PHYSICIAN

Required:

true

3 Diagnosis

choice

Postneonatal (after 28 days of birth) CP?

Technical specs

CSV column name:

CD_PST_NEONAT_CP_28D

Required:

true

Options
LabelValue
Yes1
No0
Unknown99
Not collected999
Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Problem

Data element:

ProblemName

text

Coding diagnosis for postneonatal CP

Help

Use "Z78.9 - Other specified health status" if you can not find a correct ICD-10 code and specify in the free text field

Technical specs

CSV column name:

CD_PST_NEONAT_CP

Reference list:

ICD10

Only when:

Required:

true

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Problem

Data element:

ProblemName

text

Text diagnosis for postneonatal CP

Technical specs

CSV column name:

TX_PST_NEONAT_CP

Only when:

Required:

true

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Problem

Data element:

ProblemName

choice

Age at the time of the insult (in months)

Technical specs

CSV column name:

CD_AGE_PST_NEON_CP

Only when:

Required:

true

Options
LabelValue
Known1
Unknown99
Not collected999
Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Problem

Data element:

ProblemStartDate

number

Specify the age at the time of the insult (in months)

Technical specs

CSV column name:

MS_AGE_PST_NEONAT_CP

Only when:

Required:

false

Validation
  • The age at the time of insult: must be an integer (error)
choice

Has the diagnosis been confirmed after the age of 4 years?

Technical specs

CSV column name:

CD_DIAGS_CONFIRM

Required:

true

Options
LabelValue
Yes1
No; dead2
No; lost to follow up but with confirmed diagnosis of CP after the age of 2 years3
Unknown99
Not collected999

4 Scales and classification

choice

CP classification 1

Technical specs

CSV column name:

CD_CP_CLASS_1

Required:

true

Options
LabelValue
Spastic1
Dyskinetic2
Dystonic dyskinesia3
Choreo-athetotic dyskinesia4
Ataxia5
Unable to classify6
Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Problem

Data element:

ProblemName

choice

CP classification 2

Help

Spastic bilateral: limbs on both sides of the body are involved Spastic unilateral (hemiplegia): limbs on one side of the body are involved

Technical specs

CSV column name:

CD_CP_CLASS_2

Only when:

Required:

true

Options
LabelValue
Bilateral1
Unilateral2
Unknown99
Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Problem

Data element:

ProblemName

choice

CP classification 3

Technical specs

CSV column name:

CD_CP_CLASS_3

Only when:

Required:

true

Options
LabelValue
Right1
Left2
Unknown99
Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Problem

Data element:

ProblemLaterality

choice

Bimanual Fine Motor Function Classification (BFMF)

Help

Give information on BFMF at minimum age of 4 years. You can give information on BFMF only, or on MACS only or on both of them

Technical specs

CSV column name:

CD_BFMF

Required:

true

Options
LabelValue
Level 11
Level 22
Level 33
Level 44
Level 55
Unknown99
Not collected999
Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.GeneralMeasurement

Data element:

ResultValue

Validation
  • 'MACS: level 1' cannot be combined with ‘BFMF: level 3, level 4 and level 5’ (warning)
  • 'MACS: level 2' cannot be combined with ‘BFMF: level 4 and level 5’ (warning)
  • 'MACS: level 4' cannot be combined with ‘BFMF: level 1 and level 2’ (warning)
  • 'MACS: level 5' cannot be combined with ‘BFMF: level 1, level 2 and level 3’ (warning)
choice

Manual Ability Classification System (MACS)

Help

Give information on MACSat minimum age of 14 years. You can give information on BFMF only, or on MACS only or on both of them

Technical specs

CSV column name:

CD_MACS

Required:

true

Options
LabelValue
Level 11
Level 22
Level 33
Level 44
Level 55
Unknown99
Not collected999
Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.GeneralMeasurement

Data element:

ResultValue

Validation
  • 'MACS: level 1' cannot be combined with ‘BFMF: level 3, level 4 and level 5’ (warning)
  • 'MACS: level 2' cannot be combined with ‘BFMF: level 4 and level 5’ (warning)
  • 'MACS: level 4' cannot be combined with ‘BFMF: level 1 and level 2’ (warning)
  • 'MACS: level 5' cannot be combined with ‘BFMF: level 1, level 2 and level 3’ (warning)
choice

Gross Motor Function Classification (GMFCS)

Help

Give information on GMFCS between the 4th and 6th birthdays.

Technical specs

CSV column name:

CD_GMFCS

Required:

true

Options
LabelValue
Level 11
Level 22
Level 33
Level 44
Level 55
Unknown99
Not collected999
Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.GeneralMeasurement

Data element:

ResultValue

choice

Viking speech scale

Help

If you have several evaluations, report the one which is done at the age closest to 60 months.

Technical specs

CSV column name:

CD_VIKING

Required:

true

Options
LabelValue
Level 11
Level 22
Level 33
Level 44
Unknown99
Not collected999
choice

Age Viking speech scale

Technical specs

CSV column name:

CD_VIKING_AGE

Only when:

Required:

true

Options
LabelValue
Known1
Unknown99
Not collected999
number

Specify the age completing the Viking speech scale (in months)

Technical specs

CSV column name:

MS_VIKING_AGE

Only when:

Required:

false

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.GeneralMeasurement

Data element:

ResultDateTime

Validation
  • The age completing the Viking speech scale: must be an integer (error)
  • The Viking age should be greater than or equal to 36 (warning)

5 Comorbidities

choice

Intellectual impairment

Technical specs

CSV column name:

CD_INTEL_IMPAIRMNT

Required:

true

Options
LabelValue
Level 1
Level 2
Level in between 20-493
Level in between 50-694
Level ≥705
Unknown99
Not collected999
Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.GeneralMeasurement

Data element:

ResultValue

choice

IQ test

Technical specs

CSV column name:

CD_IQ_TEST

Only when:

Required:

true

Options
LabelValue
Testing1
Testing with the IQ value2
Testing without the IQ value3
Clinical estimate4
Unknown99
Not collected999
choice

Date of IQ test

Technical specs

CSV column name:

CD_DT_IQ_TEST

Only when:

Required:

false

Options
LabelValue
Known1
Unknown99
Not collected999
date

Date of IQ test

Technical specs

Format:

DD/MM/YYYY

CSV column name:

DT_IQ_TEST

Only when:

Required:

true

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.GeneralMeasurement

Data element:

ResultDateTime

choice

Visual impairment

Technical specs

CSV column name:

CD_VIS_IMPAIRMNT

Required:

true

Options
LabelValue
Yes1
No0
Unknown99
Not collected999
Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Problem

Data element:

ProblemName

choice

Severe visual impairment

Help

Defined as blind or no useful vision (after correction, on the better eye). If the level of vision loss is <6/60 (Snellen scale) or <0.1 (Decimal scale) in both eyes, this will conform to the SCPE criteria for ‘Severe vision impairment’

Technical specs

CSV column name:

CD_SEV_VIS_IMPAIRMNT

Only when:

Required:

true

Options
LabelValue
Yes1
No0
Unknown99
Not collected999
Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Problem

Data element:

ProblemName

choice

Hearing impairment

Technical specs

CSV column name:

CD_EAR_IMPAIRMNT

Required:

true

Options
LabelValue
Yes1
No0
Unknown99
Not collected999
Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Problem

Data element:

ProblemName

choice

Severe hearing impairment

Help

Defined as ‘severe’ or ‘profound’ hearing loss, i.e. loss greater than 70dB (before correction, on the better ear)

Technical specs

CSV column name:

CD_SEV_EAR_IMPAIRMNT

Only when:

Required:

true

Options
LabelValue
Yes1
No0
Unknown99
Not collected999
Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Problem

Data element:

ProblemName

choice

Epilepsy

Help

Epilepsy definition: epilepsy if diagnosed by medical doctor, excluding febrile or neonatal seizures.

Technical specs

CSV column name:

CD_EPIL

Required:

true

Options
LabelValue
Never1
Ever2
Unknown99
Not collected999
Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Problem

Data element:

ProblemName

choice

Age at onset of epilepsy

Technical specs

CSV column name:

CD_AGE_ONST_EPIL

Only when:

Required:

true

Options
LabelValue
During first year of life (excluding 3 first days of life)1
During second year of life2
During third year of life3
During fourth year of life4
During fifth year of life or later5
Unknown99
Not collected999
Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Problem

Data element:

ProblemStartDate

choice

Activity of epilepsy: is the child on medication at the time of registration?

Help

Activity of epilepsy definition: Having active treatment for epilepsy at the time of data capture.

Technical specs

CSV column name:

CD_EPIL_ACTVY

Only when:

Required:

true

Options
LabelValue
Yes1
No0
Unknown99
Not collected999
Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.MedicationAgreement

Data element:

AgreedMedicine::Product

choice

Convulsions within first 72 hours?

Technical specs

CSV column name:

CD_CONV_72H

Required:

true

Options
LabelValue
Yes1
No0
Unknown99
Not collected999
Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Problem

Data element:

ProblemName

choice

Does the child have a diagnosed syndrome?

Technical specs

CSV column name:

CD_CHLD_DIAGS_SYNDR

Required:

true

Options
LabelValue
Yes1
No0
Unknown99
Not collected999
Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Problem

Data element:

ProblemName

text

Coding diagnosis for syndromes

Help

Use "Z78.9 - Other specified health status" if you can not find a correct ICD-10 code and specify in the free text field

Technical specs

CSV column name:

CD_ICD10_SYNDR

Reference list:

ICD10

Only when:

Required:

true

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Problem

Data element:

ProblemName

text

Text diagnosis for syndromes

Technical specs

CSV column name:

TX_DIAGS_SYNDR

Only when:

Required:

true

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Problem

Data element:

ProblemName

choice

Cardiac malformation

Technical specs

CSV column name:

CD_CARD_MALF

Required:

true

Options
LabelValue
Yes1
No0
Unknown99
Not collected999
Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Problem

Data element:

ProblemName

text

Coding diagnosis for cardiac malformation

Help

Use "Z78.9 - Other specified health status" if you can not find a correct ICD-10 code and specify in the free text field

Technical specs

CSV column name:

CD_ICD10_CARD_MALF

Reference list:

ICD10

Only when:

Required:

true

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Problem

Data element:

ProblemName

text

Free text for cardiac malformation

Technical specs

CSV column name:

TX_CARD_MALF

Only when:

Required:

true

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Problem

Data element:

ProblemName

choice

Type of cardiac malformations

Technical specs

CSV column name:

CD_TPE_CARD_MALF

Only when:

Required:

true

Options
LabelValue
Congenital malformations of cardiac chambers and connections1
Congenital malformations of cardiac septa2
Congenital malformations of pulmonary and tricuspid valves3
Congenital malformations of aortic and mitral valves4
Other congenital malformations of heart5
Congenital malformations of great arteries6
Congenital malformations of great veins7
text

Free text for describing any additional other congenital anomalies

Technical specs

CSV column name:

TX_CONG_AN

Required:

true

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Problem

Data element:

ProblemName

6 Procedures

choice

Ostomies (gastrostomy, jejunostomy)

Help

ostomies definition: any procedure that transgresses the abdominal wall to enable feeding (e.g. gastrostomy, jejunostomy)

Technical specs

CSV column name:

CD_OST

Required:

true

Options
LabelValue
Never1
Ever2
Unknown99
Not collected999
Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Procedure

Data element:

ProcedureType

choice

Age of insertion of -stomy

Technical specs

CSV column name:

CD_AGE_STOMY

Only when:

Required:

true

Options
LabelValue
Known1
Unknown99
Not collected999
number

Specify the age at insertion of -stomy (in months)

Technical specs

CSV column name:

MS_AGE_OST

Only when:

Required:

false

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Procedure

Data element:

ProcedureStartDate

Validation
  • The age at insertion of stomy: must be an integer (error)
  • The age at insertion of stomy can be minimum 1 month (warning)
  • The age at insertion of stomy can be maximum 11 month (warning)
choice

Apgar score at 5 minutes?

Technical specs

CSV column name:

CD_APGAR_5MIN

Required:

true

Options
LabelValue
00
11
22
33
44
55
66
77
88
99
1010
Unknown99
Not collected999
Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.ApgarScore

Data element:

ApgarScoreTotal

choice

Admission in a neonatal intensive care unit

Technical specs

CSV column name:

CD_ADMI_NCU

Required:

true

Options
LabelValue
Yes1
No0
Unknown99
Not collected999
Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Encounter

Data element:

Location::HealthcareProvider

Validation
  • 'Gestational age lower than 32 weeks' cannot be combined with 'Admission in a neonatal intensive care unit: no' (warning)
  • 'Birth weight lower than 1500g' cannot be combined with 'Admission in a neonatal intensive care unit: no' (warning)
choice

Ventilation (not resuscitation) in this unit?

Help

Ventilation (not resuscitation) in the neonatal intensive care unit: means that the child has been mechanically ventilated by respirator, and not just resuscitated (e.g. mask insufflation) or intubated only for a short duration (e.g. during transport)

Technical specs

CSV column name:

CD_VENTIL

Only when:

Required:

true

Options
LabelValue
Yes1
No2
Unknown99
Not collected999
Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Procedure

Data element:

ProcedureType

choice

Has the child received therapeutic cooling?

Technical specs

CSV column name:

CD_COOL

Required:

true

Options
LabelValue
Yes1
No2
Unknown99
Not collected999
Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Procedure

Data element:

ProcedureType

7 Imaging

choice

Has imaging been performed?

Technical specs

CSV column name:

CD_IMAG

Required:

true

Options
LabelValue
Yes1
No2
Unknown99
Not collected999
Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Procedure

Data element:

ProcedureType

choice

Postneonatal imaging

Technical specs

CSV column name:

CD_PST_NEONAT_IMAG

Only when:

Required:

true

Options
LabelValue
MRI1
CT2
US3
Unknown99
Not collected999
Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Procedure

Data element:

ProcedureType

choice

Chronological age at the more recent postneonatal imaging (months)

Technical specs

CSV column name:

CD_AGE_PST_NEONAT_IMAG

Only when:

Required:

true

Options
LabelValue
Known (value ranges from 2 to 99 in months)1
99 months or later2
Unknown99
Not collected999
Validation
  • The chronological age at the more recent postneonatal imaging: must be an integer (error)
number

Specify the chronological age at the more recent postneonatal imaging (months)

Technical specs

CSV column name:

MS_CD_AGE_PST_NEONAT_IMAG

Only when:

Required:

false

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Procedure

Data element:

ProcedureStartDate

Validation
  • The chronological age at the more recent postneonatal imaging: must be an integer (error)
  • The minimum age is 2 months (error)
  • The maximum age is 99 months (error)
choice

Classification of MRI results

Help

For further information on this classification, please look at the CP neuroimaging classification Visit scpenetwork.eu!

Technical specs

CSV column name:

CD_MRI_RESLT

Only when:

Required:

true

Options
LabelValue
Maldevelopments1
Predominant white matter injury2
Predominant grey matter injury3
Miscellaneous changes4
Normal5
Unknown99
Not collected999
Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.TextResult

Data element:

TextResultReport

choice

Specify maldevelopments

Technical specs

CSV column name:

CD_MALDEV_MRI

Only when:

Required:

true

Options
LabelValue
Disorders or proliferation or migration or organisation1
Other maldevelopments2
choice

Specify predominant grey matter injury

Technical specs

CSV column name:

CD_GREY_INJRY_MRI

Only when:

Required:

false

Options
LabelValue
Basal ganglia/thalamus lesions1
Cortico subcortical lesions only not covered by arterial infarctions2
Arterial infarctions3
Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.TextResult

Data element:

TextResultReport

choice

Specify predominant white matter injury

Technical specs

CSV column name:

CD_WHITE_INJRY_MRI

Only when:

Required:

false

Options
LabelValue
Periventricular leukomalacia, PVL1
Sequelae of intraventricular haemorrhage (IVH) or periventricular hemorrhagic infarction (PVHI)2
Combination of PVL and IVH sequelae3
Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.TextResult

Data element:

TextResultReport

text

Free text for the MRI or CT or US result

Technical specs

CSV column name:

TX_MRI_RESULT

Only when:

Required:

true

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.TextResult

Data element:

TextResultReport

choice

Side of this imaging result

Technical specs

CSV column name:

CD_MRI_SIDE

Only when:

Required:

true

Options
LabelValue
Right1
Left2
Bilateral3
Unknown99
Not collected999
Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Procedure

Data element:

ProcedureAnatomicalLocation

choice

Has imaging been performed before 29 days of age ?

Technical specs

CSV column name:

CD_IMAG_29D

Only when:

Required:

true

Options
LabelValue
US imaging1
MRI imaging2
Both US and MRI imaging3
No neonatal imaging4
Unknown99
Not collected999
choice

Chronological age at the latest neonatal imaging (weeks)

Technical specs

CSV column name:

CD_AGE_NEONAT_IMAG

Only when:

Required:

true

Options
LabelValue
Known1
Unknown99
Not collected999
Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Procedure

Data element:

ProcedureStartDate

number

Specify the chronological age at the latest neonatal imaging (weeks)

Technical specs

CSV column name:

MS_AGE_NEONAT_IMAG

Only when:

Required:

false

choice

Classification of neonatal imaging results

Help

For further information on this classification, please look at the neonatal neuroimaging classification at Visit scpenetwork.eu!

Technical specs

CSV column name:

CD_NEONAT_IMAG_RESLT

Only when:

Required:

true

Options
LabelValue
Maldevelopments1
Predominant white matter injury2
Predominant grey matter injury3
Miscellaneous changes4
Normal5
Unknown99
Not collected999
Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.TextResult

Data element:

TextResultReport

choice

Specify maldevelopments

Technical specs

CSV column name:

CD_MALDEV_NEONAT_IMAG

Only when:

Required:

false

Options
LabelValue
Disorders or proliferation or migration or organisation1
Other maldevelopments2
Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.TextResult

Data element:

TextResultReport

choice

Specify predominant white matter injury

Technical specs

CSV column name:

CD_WHITE_INJRY_NEONAT

Only when:

Required:

false

Options
LabelValue
Echogenicity or MR signal intensity abnormalities1
Periventricular haemorrhagic infarction (IVH grade lV)2
Posthaemorrhagic ventricular dilatation3
Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.TextResult

Data element:

TextResultReport

choice

Specify predominant grey matter injury

Technical specs

CSV column name:

CD_GREY_INJRY_NEONAT

Only when:

Required:

false

Options
LabelValue
Basal ganglia/thalamus lesions1
Watershed lesions (parasagittal lesions)2
Arterial infarctions (middle cerebral artery)3
Haemorrhage4
Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.TextResult

Data element:

TextResultReport

text

Free text for the neonatal imaging result

Technical specs

CSV column name:

TX_NEONAT_IMAG_RSLT

Only when:

Required:

true

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.TextResult

Data element:

TextResultReport

choice

Side of this neonatal imaging result?

Technical specs

CSV column name:

CD_NEONAT_IMAG_SIDE

Only when:

Required:

true

Options
LabelValue
Right1
Left2
Bilateral3
Unknown99
Not collected999
Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Procedure

Data element:

ProcedureAnatomicalLocation