Belgian Cystic Fibrosis Registry (BCFR)

Version: from 01/01/2021 - 31/12/2021
Status: inactive
Unique ID: patient ID and year of collection
How to create a CSV file for this data collection?

Start date: 15/12/2021
End date creation: 02/05/2023
End date submission: 02/05/2023
End date comments: 09/05/2023

Full view CSV column names Validation rules Reference lists Computed expressions Additional information CSV extract

1 Background data

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.

number

Patient code

Help

This is the Patient Code used in the previous data collection application. This code is provided for information purposes only, should not be modified and should not be provided for new patients.

Technical specs

CSV column name:

patient_code

Length:

Required:

false

Stable:

true

number

Year of collection

Not to be included in the CSV.

Help

This is the year of the data collection. This value cannot be modified.

Technical specs

CSV column name:

year_of_collection

Length:

Default value:

2021

Required:

true

Read only

Validation

Year of the last consultation date must match with the year of the data collection (error)
Year of the date of the best lung function must match with the year of the data collection (error)
Year of the date of the best post-transplantation lung function must be <= the year of the data collection (error)
Year of the date of the best post-transplantation lung function must be <= the year of the data collection (error)
Year of the DEXA date must be smaller or equal to the year of the data collection (error)
Year of the date of the renal function must match with the year of the data collection (error)
Date of birth cannot be after the year of data collection (error)
Date of most recent DEXA should be within 5 years before the period start date (error)
Year of date of clinical diagnosis cannot be after the year of data collection (error)
If the year of most recent DEXA is equal to the year of the data collection, Osteopenia / Osteoporosis should not be equal to "Not done" (error)
Date Renal function (1 month post-transplantation). should be equal or lower to year of collection (error)
Date of death cannot be after the year of collection (error)
Date of sweat test cannot be after the year of collection (error)
Date of genotype cannot be after the year of collection (error)
Date transepithelial potential difference cannot be after the year of collection (error)
Date of sweat test cannot be after the year of collection (error)
Date consultation cannot be after the year of collection (error)
Date of best LungFx cannot be after the year of collection (error)
Date best post-transp LungFx 1 cannot be after the year of collection (error)
Date best post-transp LungFx 2 cannot be after the year of collection (error)
Date of most recent DEXA (error)
Renal function (last consultation of the year) cannot be after the year of collection (error)
Renal function (1 month post-transplantation) cannot be after the year of collection (error)
Date of new genotype cannot be after the year of collection (error)
Date of the lung clearance index LCI cannot be after the year of collection (error)
Start date ivacaftor cannot be after the year of collection (error)
Stop date ivacaftor should be during the year of collection (error)
Start date Lumacaftor/ivacaftor cannot be after the year of collection (error)
Stop date Lumacaftor/ivacaftor should be during the year of collection (error)
Start date Tezacaftor/ivacaftor cannot be after the year of collection (error)
Stop date Tezacaftor/ivacaftor should be during the year of collection (error)
Start date Elexacaftor/tezacaftor/ivacaftor cannot be after the year of collection (error)
Stop date Elexacaftor/tezacaftor/ivacaftor should be during the year of collection (error)
Start date other CFTR modulating therapy cannot be after the year of collection (error)
Stop date other CFTR modulating therapy should be during the year of collection (error)
Start date Blinded clinical trial cannot be after year of collection (error)
Stop date Blinded clinical trial should be during the year of collection (error)
Year of the LCI date must match with the year of the data collection (error)

list

Treating physician

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

text

RIZIV/INAMI-code of the treating physician

Technical specs

CSV column name:

treating_physician|rizivinamicode_of_the_treating_physician

Length:

100

Reference list:

PHYSICIAN

Required:

true

Stable:

true

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.HealthProfessional

Data element:

HealthProfessionalIdentificationNumber

Validation

The list of treating physicians cannot contain twice the same physician (error)

choice

I confirm that an informed consent has been signed

Technical specs

CSV column name:

informed_consent_signed

Required:

true

Options

Label	Value
No	1
Yes	2

Validation

If the patient status is equal to "Revoked consent", informed consent signed should be equal to "No" (error)

1.1 Identification

patient identificator

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

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 the 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 patient ID field.

Technical specs

CSV column name:

patient_id|internal_patient_id

Length:

Required:

false

Stable:

true

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Patient

Data element:

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

Label	Value
Yes	TRUE
No	FALSE

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:

Required:

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

Stable:

true

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:

Required:

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

Stable:

true

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:

true

Stable:

true

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Patient

Data element:

DateOfBirth

Validation

Date of death cannot precede date of birth (error)
Diagnosis possible at a gestational age of 4 months at the earliest (error)
Sweat test date cannot precede date of birth (error)
Genotype possible at a gestational age of 4 months at the earliest (error)
Trans epithelial potential date cannot precede date of birth (error)
Date of birth cannot be after the year of data collection (error)
Date of best post-transplantation lung function 1 cannot be before date of birth (error)
Date of best post-transplantation lung function 2 cannot be before date of birth (error)
Date of renal function (1 month post-transplantation) cannot be before date of birth (error)
Sweat test date cannot precede date of birth (error)
Date of new genotype cannot precede date of birth (error)
Date of consultation cannot precede date of birth (error)
Date of best lung function cannot precede date of birth (error)
Date of most recent DEXA cannot be before date of birth (error)
Date of renal function (last consultation of the year) cannot be before date of birth (error)
Start date Ivacaftor cannot be before date of birth (error)
Start date Lumacaftor/ivacaftor cannot be before date of birth (error)
Start date Tezacaftor/ivacaftor cannot be before date of birth (error)
Start date Elexacaftor/tezacaftor/ivacaftor cannot be before date of birth (error)
Start date Blinded clinical trial cannot be before date of birth (error)
Start date Other CFTR modulating therapy cannot be before date of birth (error)

choice

Sex

Help

Indication of the administrative sex as registered in the national registry. For patients from countries with already an indication ‘X’ for indeterminate sex, please tick 'unknown

Technical specs

CSV column name:

patient_id|sex

Required:

true

Stable:

true

Options

Label	Value
Female	F
Male	M
Unknown	U

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Patient

Data element:

Gender

text

Place of residence

Help

If the patient does not live in Belgium, please enter '9999' and fill out the country of residence

Technical specs

CSV column name:

patient_id|place_of_residence

Length:

Reference list:

POSTAL_CODE

Required:

true

Stable:

true

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Patient

Data element:

Place of residence

boolean

Deceased?

Technical specs

CSV column name:

patient_id|deceased

Required:

true

Stable:

true

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Patient

Data element:

DeathIndicator

Validation

If the patient is reported as deceased, the patient status cannot be equal to "No information" (error)

Options

Label	Value
Yes	TRUE
No	FALSE

date

Date of death

Technical specs

Format:

DD/MM/YYYY

CSV column name:

patient_id|date_of_death

Only when:

Required:

true

Stable:

true

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Patient

Data element:

DateOfDeath

Validation

Date of death cannot precede date of birth (error)
Date of clinical diagnosis cannot be after date of death (error)
Date of sweat test cannot be after date of death (error)
Date of genotype cannot be after date of death (error)
Date of transepithelial potential difference cannot be after date of death (error)
Date of most recent DEXA cannot be after date of death (error)
Date of renal function (1 month post-transplantation) cannot be after date of death (error)
Date of consultation cannot be after date of death ()
Date of best LungFx cannot be after date of death ()
Date best post-transp LungFx 1 cannot be after date of death ()
Date best post-transp LungFx 2 cannot be after date of death ()
Date of renal function (last consultation of the year) cannot be after date of death ()
Date of sweat test cannot be after date of death (error)
Date of new genotype cannot be after date of death (error)
Date of death cannot be after the year of collection (error)
Start date Ivacaftor cannot be after date of death (error)
Stop date Ivacaftor cannot be after date of death (error)
Start dateLumacaftor/ivacaftor cannot be after date of death (error)
Stop date Lumacaftor/ivacaftor cannot be after date of death (error)
Start date Tezacaftor/ivacaftor cannot be after date of death (error)
Stop date Tezacaftor/ivacaftor cannot be after date of death (error)
Start date Elexacaftor/tezacaftor/ivacaftor cannot be after date of death (error)
Stop date Elexacaftor/tezacaftor/ivacaftor cannot be after date of death (error)
Start date Blinded clinical trial cannot be after date of death (error)
Stop date Blinded clinical trial cannot be after date of death (error)
Start date Other CFTR modulating therapy cannot be after date of death (error)
Stop date Other CFTR modulating therapy cannot be after date of death (error)

text

Country of residence

Technical specs

CSV column name:

country_of_residence

Length:

Reference list:

COUNTRY

Only when:

Required:

true

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Patient

Data element:

Country

number

Order in the family

Technical specs

CSV column name:

order_in_the_family

Length:

Required:

false

Stable:

true

Validation

Order in the family must be > 0 and <= 20 (error)
Order in the family must be > 0 and <= 20 (error)

Height father cannot contain more than 1 decimal (error)
Height of father must be >= 120 cm and <= 220 cm (error)
Height of father must be >= 120 cm and <= 220 cm (error)

boolean

(Height father) measured

Technical specs

CSV column name:

height_father_measured

Required:

false

Stable:

true

Options

Label	Value
Yes	TRUE
No	FALSE

number

Height mother (cm)

Technical specs

CSV column name:

height_mother_cm

Length:

8.1

Required:

false

Stable:

true

Validation

Height mother cannot contain more than 1 decimal (error)
Height of mother must be >= 120 cm and <= 220 cm (error)
Height of mother must be >= 120 cm and <= 220 cm (error)

boolean

(Height mother) measured

Technical specs

CSV column name:

height_mother_measured

Required:

false

Stable:

true

Options

Label	Value
Yes	TRUE
No	FALSE

text

Received transplant

Technical specs

CSV column name:

CD_RECEIVD_TRSP

Reference list:

TRSP_YN

Required:

true

Stable:

true

Validation

If Lung transplant received is indicated as "Yes", Transplant received should also be "Yes" (error)

text

Received lung transplant

Help

WARNING: The registry is very different for patients with a transplant and patients without transplant. If you change this value, some questions become inactive and other questions become active. All answers on the inactive questions are lost. In case you changed this value by accident, you can exit the document without saving to restore the previous state.

Technical specs

CSV column name:

CD_RECEIVD_LUNG_TRSP

Length:

Reference list:

LUNGTRSP_YN

Required:

true

Stable:

true

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Procedure

Data element:

ProcedureType

Validation

If Lung transplant received is indicated as "Yes", Transplant received should also be "Yes" (error)

choice

Diagnosis confirmed

Help

To determine if the diagnosis is confirmed, please use the inclusion criteria of the European CFS Patient Registry (ECFSPR). Only patients who fulfil the diagnostic criteria below should be included in the registry. a. Two sweat tests > 60 mmol/L chloride : CF diagnosis accepted b. One sweat test > 60 mmol/L AND DNA Analysis/Genotyping - two identified disease causing CF mutations : CF diagnosis accepted c. Sweat Value less than or equal to 60 mmol/L : if the sweat value is less than or equal to 60 mmol/L, then at least 2 of the following should be fulfilled: c.i. DNA Analysis/Genotyping - two identified disease causing CF mutations. c.ii. Transepithelial (Nasal) Potential Difference - Study consistent with a diagnosis of CF. c.iii. Clinical Presentation - typical features of CF.

Technical specs

CSV column name:

diagnosis_confirmed

Required:

true

Stable:

true

Options

Label	Value
No	1
Yes	2
To be confirmed	3
Unknown	4

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Problem

Data element:

ProblemStatus

Validation

If patient status is equal to "Revoked diagnosis", diagnosis confirmed should not be equal to "yes" (error)

1.2 Diagnosis

date

Date of clinical diagnosis

Help

The date of clinical diagnosis is the date when the physician considers the person as patient with CF.

Technical specs

Format:

DD/MM/YYYY

CSV column name:

date_of_clinical_diagnosis

Required:

false

Stable:

true

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Problem

Data element:

ProblemStatusDate

Validation

Diagnosis possible at a gestational age of 4 months at the earliest (error)
Date of clinical diagnosis cannot be after date of death (error)
Year of date of clinical diagnosis cannot be after the year of data collection (error)

multichoice

Symptoms

Technical specs

CSV column name:

symptoms

Required:

true

Stable:

true

Options

Label	Value
Respiratory problems	respiratory_problems
Nasal polyposis/chronic sinusitis	nasal_polyposischronic_sinusitis
Chronic dia-/steatorrhea/malabsorption	chronic_diasteatorrheamalabsorption
Meconium ileus	meconium_ileus
Intestinal obstruction (other than meconium ileus)	intestinal_obstruction_other_than_meconium_ileus
Rectal prolapse	rectal_prolapse
Dehydration/electrolyte imbalance	dehydrationelectrolyte_imbalance
Failure to thrive	failure_to_thrive
Prenatal diagnosis	prenatal_diagnosis
Neonatal screening test	neonatal_screening_test
Prolonged icterus	prolonged_icterus
Family history	family_history
Infertility	infertility
Other	other
Missing data	missing_data

Nested option fields

When meconium_ileus Is selected:
choice
Meconium ileus treatment
Technical specs
CSV column name:
symptoms|CD_MECON_TRTMNT
Required:
true
Stable:
true
Options
Label Value
Without surgery 1
With surgery 2
Unknown 99
When other Is selected:
text
Specify
Technical specs
CSV column name:
symptoms|specify
Length:
255
Required:
false
Stable:
true
Mapping of the clinical building blocks (indicative only)
Concept:
be.en.hd.Problem
Data element:
ProblemName

Label	Value
Without surgery	1
With surgery	2
Unknown	99

Validation

Diagnosis symptoms: the option "Missing Data" cannot be combined with other options (error)
If, in the symptoms list, "neonatal screening test" is checked, the value of neonatal screening should be equal to "Performed positive" (error)

choice

Neonatal screening test

Technical specs

CSV column name:

neonatal_screening_test

Required:

true

Stable:

true

Options

Label	Value
Unknown	0
Not done	1
Performed positive	2
Performed negative	3
Performed result unknown	4
Missing Data	999

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Procedure

Data element:

ProcedureType

Validation

Diagnosis symptoms: the option "Missing Data" cannot be combined with other options (error)
If, in the symptoms list, "neonatal screening test" is checked, the value of neonatal screening should be equal to "Performed positive" (error)

1.3 Sweat test

date

Date of sweat test

Help

Give the date and results of the first sweat test or the oldest known test.

Technical specs

Format:

DD/MM/YYYY

CSV column name:

date_of_sweat_test

Required:

false

Stable:

true

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.TextResult

Data element:

TextResultDateTime

Validation

Sweat test date cannot precede date of birth (error)
Date of sweat test cannot be after date of death (error)
Sweat test date cannot precede date of birth (error)
Date of sweat test cannot be after date of death (error)
Date of sweat test cannot be after the year of collection (error)
Date of sweat test cannot be after the year of collection (error)

choice

Type of sweat test

Technical specs

CSV column name:

type_of_sweat_test

Required:

false

Stable:

true

Options

Label	Value
Unknown	0
Titration	1
Conductivity	3
Missing Data	999

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Procedure

Data element:

ProcedureType

number

Chloride

Technical specs

CSV column name:

chloride

Length:

8.1

Required:

false

Stable:

true

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.LaboratoryTestResult

Data element:

Result

Validation

No mutation has been reported (Chromosome 1, Chromosome 2, Chromosome 1 (cDNA name), Chromosome 2 (cDNA name), Chromosome 1 (Protein name), Chromosome 2 (Protein name)) (error)
Chloride cannot contain more than 1 decimal (error)
Chloride cannot contain more than 1 decimal (error)
Chloride must be between 5 and 170 (error)
Chloride must be between 5 and 170 (error)

number

Sodium

Technical specs

CSV column name:

sodium

Length:

8.1

Required:

false

Stable:

true

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.LaboratoryTestResult

Data element:

Result

Validation

Sodium cannot contain more than 1 decimal (error)
Sodium cannot contain more than 1 decimal (error)
Sodium must be between 5 and 160 (error)
Sodium must be between 5 and 160 (error)

1.4 Genotype

date

Date of initial genotype

Technical specs

Format:

DD/MM/YYYY

CSV column name:

date_of_genotype

Required:

false

Stable:

true

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.LaboratoryTestResult

Data element:

TestDateTime

Validation

Genotype possible at a gestational age of 4 months at the earliest (error)
Date of genotype cannot be after date of death (error)
Date of new genotype cannot precede date of initial genotype (error)
Date of genotype cannot be after the year of collection (error)

fieldset

Legacy Name

Help

Please report always the legacy name, if known.

Fields

Section help

Please report always the legacy name, if known.

text

Chromosome 1

Technical specs

CSV column name:

legacy_name|chromosome_1

Length:

Reference list:

CHROMOSOME_v2

Required:

true

Stable:

true

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.LaboratoryTestResult

Data element:

Result

Validation

No mutation has been reported (Chromosome 1, Chromosome 2, Chromosome 1 (cDNA name), Chromosome 2 (cDNA name), Chromosome 1 (Protein name), Chromosome 2 (Protein name)) (error)

text

Chromosome 1 other

Technical specs

CSV column name:

legacy_name|chromosome_1_other

Length:

100

Only when:

Required:

if_legacy_chromosome_1_equals_other

Stable:

true

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.LaboratoryTestResult

Data element:

Result

text

T Status 1

Technical specs

CSV column name:

legacy_name|t_status_1

Length:

Reference list:

TSTATUS_LEGACY

Required:

false

Stable:

true

text

Chromosome 2

Technical specs

CSV column name:

legacy_name|chromosome_2

Length:

Reference list:

CHROMOSOME_v2

Required:

true

Stable:

true

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.LaboratoryTestResult

Data element:

Result

Validation

No mutation has been reported (Chromosome 1, Chromosome 2, Chromosome 1 (cDNA name), Chromosome 2 (cDNA name), Chromosome 1 (Protein name), Chromosome 2 (Protein name)) (error)

text

Chromosome 2 other

Technical specs

CSV column name:

legacy_name|chromosome_2_other

Length:

100

Only when:

Required:

if_legacy_chromosome_2_equals_other

Stable:

true

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.LaboratoryTestResult

Data element:

Result

text

T Status 2

Technical specs

CSV column name:

legacy_name|t_status_2

Length:

Reference list:

TSTATUS_LEGACY

Required:

false

Stable:

true

fieldset

cDNA Name

Fields

text

Chromosome 1 (cDNA name)

Technical specs

CSV column name:

cdna_name|chromosome_1_cdna_name

Length:

Reference list:

CHROMOSOME_NEW_v2

Required:

false

Stable:

true

Validation

No mutation has been reported (Chromosome 1, Chromosome 2, Chromosome 1 (cDNA name), Chromosome 2 (cDNA name), Chromosome 1 (Protein name), Chromosome 2 (Protein name)) (error)

Validation

No mutation has been reported (Chromosome 1, Chromosome 2, Chromosome 1 (cDNA name), Chromosome 2 (cDNA name), Chromosome 1 (Protein name), Chromosome 2 (Protein name)) (error)

text

Chromosome 2 other (cDNA name)

Technical specs

CSV column name:

cdna_name|chromosome_2_other_cdna_name

Length:

100

Only when:

Required:

if_cDNA_chromosome_2_equals_other

Stable:

true

text

T Status 2 (cDNA name)

Technical specs

CSV column name:

cdna_name|t_status_2_cdna_name

Length:

Reference list:

TSTATUS_CDNA

Required:

false

Stable:

true

fieldset

Protein Name

Fields

text

Chromosome 1 (Protein name)

Technical specs

CSV column name:

protein_name|chromosome_1_protein_name

Length:

Reference list:

CHROMOSOME_PROTEIN_v2

Required:

false

Stable:

true

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.LaboratoryTestResult

Data element:

Result

Validation

No mutation has been reported (Chromosome 1, Chromosome 2, Chromosome 1 (cDNA name), Chromosome 2 (cDNA name), Chromosome 1 (Protein name), Chromosome 2 (Protein name)) (error)

text

Chromosome 1 other (Protein name)

Technical specs

CSV column name:

protein_name|chromosome_1_other_protein_name

Length:

100

Only when:

Required:

if_protein_chromosome_1_equals_other

Stable:

true

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.LaboratoryTestResult

Data element:

Result

text

Chromosome 2 (Protein name)

Technical specs

CSV column name:

protein_name|chromosome_2_protein_name

Length:

Reference list:

CHROMOSOME_PROTEIN_v2

Required:

false

Stable:

true

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.LaboratoryTestResult

Data element:

Result

Validation

No mutation has been reported (Chromosome 1, Chromosome 2, Chromosome 1 (cDNA name), Chromosome 2 (cDNA name), Chromosome 1 (Protein name), Chromosome 2 (Protein name)) (error)

text

Chromosome 2 other (Protein name)

Technical specs

CSV column name:

protein_name|chromosome_2_other_protein_name

Length:

100

Only when:

Required:

if_protein_chromosome_2_equals_other

Stable:

true

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.LaboratoryTestResult

Data element:

Result

1.5 Nasal Transepithelial Potential Difference

choice

Nasal transepithelial potential difference

Technical specs

CSV column name:

nasal_transepithelial_potential_difference

Required:

true

Stable:

true

Options

Label	Value
Not Executed	2
Normal	4
Evocative / Abnormal	5
Inconclusive	6
Missing Data	999

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.TextResult

Data element:

Procedure::Procedure

date

Date transepithelial potential difference

Technical specs

Format:

DD/MM/YYYY

CSV column name:

date_transepithelial_potential_difference

Only when:

Required:

true

Stable:

true

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.TextResult

Data element:

TextResultDateTime

Validation

Trans epithelial potential date cannot precede date of birth (error)
Date of transepithelial potential difference cannot be after date of death (error)
Date transepithelial potential difference cannot be after the year of collection (error)

1.6 Sweat test performed during the registration year

choice

Sweat test performed during the registration year?

Help

If a new sweat test has been done during the year, register the date and the results.

Technical specs

CSV column name:

sweat_test_performed_during_the_registration_year

Default value:

Required:

true

Options

Label	Value
No	1
Yes	2

date

Date of sweat test

Technical specs

Format:

DD/MM/YYYY

CSV column name:

date_of_sweat_test_new

Only when:

Required:

true

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.TextResult

Data element:

TextResultDateTime

Validation

Sweat test date cannot precede date of birth (error)
Date of sweat test cannot be after date of death (error)
Date of sweat test cannot be after the year of collection (error)

choice

Type of sweat test

Technical specs

CSV column name:

type_of_sweat_test_new

Only when:

Required:

true

Options

Label	Value
Unknown	0
Titration	1
Conductivity	3
Missing Data	999

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Procedure

Data element:

ProcedureType

number

Chloride

Technical specs

CSV column name:

chloride_new

Length:

8.1

Only when:

Required:

true

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.LaboratoryTestResult

Data element:

Result

Validation

Chloride cannot contain more than 1 decimal (error)
Chloride must be between 5 and 170 (error)
Chloride must be between 5 and 170 (error)

number

Sodium

Technical specs

CSV column name:

sodium_new

Length:

8.1

Only when:

Required:

false

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.LaboratoryTestResult

Data element:

Result

Validation

Sodium cannot contain more than 1 decimal (error)
Sodium must be between 5 and 160 (error)
Sodium must be between 5 and 160 (error)

1.7 New genotype test performed after diagnosis

choice

New genotype test performed after diagnosis ?

Technical specs

CSV column name:

CD_NEW_GENTPE

Required:

true

Stable:

true

Options

Label	Value
No	1
Yes	2

date

Date of last genotype

Technical specs

Format:

DD/MM/YYYY

CSV column name:

DT_LAST_GENTPE

Only when:

Required:

true

Stable:

true

Validation

Date of new genotype cannot precede date of birth (error)
Date of new genotype cannot precede date of initial genotype (error)
Date of new genotype cannot be after date of death (error)
Date of new genotype cannot be after the year of collection (error)

2 Observation

2.1 Patient status

choice

Patient Status

Help

WARNING: Sections 2-7 only become active in case of first registration or follow-up. If you fill out sections 2-7 and then change this answer to a value different from first registration or follow-up, sections 2-7 become inactive and all answers in these sections are lost. In case you changed this value by accident, you can exit the document without saving to restore the previous state.

Technical specs

CSV column name:

patient_status

Required:

true

Options

Label	Value
First registration in this center	1
In follow up	2
Not seen patient	4
Revoked diagnosis	5
Moved to other center/other country	7
No information	8
Lost to follow-up	9
Revoked consent	10

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Encounter

Data element:

ContactType

Validation

If patient status is equal to "Revoked diagnosis", diagnosis confirmed should not be equal to "yes" (error)
If the patient status is equal to "Revoked consent", informed consent signed should be equal to "No" (error)
If the patient is reported as deceased, the patient status cannot be equal to "No information" (error)

2.2 Cause of death

multichoice

Cause of death

Technical specs

CSV column name:

cause_of_death

Only when:

Required:

true

Options

Label	Value
Cardiac	cardiac
Respiratory	respiratory
Hepatic - gastrointestinal	hepatic__gastrointestinal
Trauma	trauma
Suicide	suicide
Associated with cancer	associated_with_cancer
Associated with organ transplantation	associated_with_organ_transplantation
Other cause (CF-related)	other_cause_cfrelated
Other cause (non-CF-related)	other_cause_noncfrelated
Cause unknown	cause_unknown

Nested option fields

When associated_with_cancer Is selected:
text
Type of cancer
Technical specs
CSV column name:
cause_of_death|type_of_cancer
Length:
100
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
be.en.hd.Problem
Data element:
ProblemName
When associated_with_organ_transplantation Is selected:
multichoice
Type
Technical specs
CSV column name:
cause_of_death|type
Required:
true
Options
Label Value
Chronic lung allograft dysfunction (CLAD) chronic_lung_allograft_dysfunction_clad
Infection infection
Other other
Mapping of the clinical building blocks (indicative only)
Concept:
be.en.hd.Procedure
Data element:
ProcedureType
Nested option fields
- When other Is selected:
  text
  Specify
  Technical specs
  CSV column name:
  cause_of_death|type|specify
  Length:
  255
  Required:
  false
  Mapping of the clinical building blocks (indicative only)
  Concept:
  be.en.hd.Problem
  Data element:
  ProblemName
When other_cause_cfrelated Is selected:
text
Specify other CF-related cause of death
Technical specs
CSV column name:
cause_of_death|TX_COD_CF_OTH
Required:
false
When other_cause_noncfrelated Is selected:
text
Specify other non CF-related cause of death
Technical specs
CSV column name:
cause_of_death|TX_COD_NONCF_OTH
Required:
false

Label	Value
Chronic lung allograft dysfunction (CLAD)	chronic_lung_allograft_dysfunction_clad
Infection	infection
Other	other

Validation

Cause of death : the option "Cause unknown" cannot be combined with other options (error)

2.3 Last consultation of the year

Section help

Weight, height and lung function must come from the same visit. If a parameter is not available, take the full parameters of the previous visit or hospitalization.

date

Date consultation

Technical specs

Format:

DD/MM/YYYY

CSV column name:

date_consultation

Only when:

Required:

true

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Encounter

Data element:

StartDateTime

Validation

Year of the last consultation date must match with the year of the data collection (error)
Date of consultation cannot be after date of death ()
Date of consultation cannot precede date of birth (error)
Date consultation cannot be after the year of collection (error)

fieldset

Anthropometry

Fields

number

Weight (kg)

Technical specs

CSV column name:

anthropometry|weight

Length:

8.3

Required:

true

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.BodyWeight

Data element:

WeightValue

Validation

Weight cannot contain more than 3 decimals (error)
Patient weight must be between 0,80 and 150 Kg (error)
Patient weight must be between 0,80 and 150 Kg (error)

number

Height (cm)

Technical specs

CSV column name:

anthropometry|height

Length:

8.1

Required:

true

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.BodyHeight

Data element:

HeightValue

Validation

Height cannot contain more than 1 decimal (error)
Patient height must be between 25 and 220 cm (error)
Patient height must be between 25 and 220 cm (error)

number

BMI

Not to be included in the CSV.

Technical specs

CSV column name:

anthropometry|bmi

Length:

8.1

Computed:

Required:

false

fieldset

Lung function

Fields

choice

Lung function executed

Technical specs

CSV column name:

lung_function|executed

Required:

true

Options

Label	Value
No	1
Yes	2
Impossible	3
Missing Data	999

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.TextResult

Data element:

Procedure::Procedure

Validation

Lung function: FEV1 must be smaller than FVC (error)
FVC cannot contain more than 3 decimals (error)
FEV1 cannot contain more than 3 decimals (error)
FEF25-75 cannot contain more than 3 decimals (error)

Nested option fields

When 2 Is selected:
number
FVC (l)
Technical specs
CSV column name:
lung_function|executed|fvc_l
Length:
8.3
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
be.en.hd.TextResult
Data element:
TextResult
number
FEV1 (l)
Help
FEV1: take the best value before or after the use of a bronchodilator.
Technical specs
CSV column name:
lung_function|executed|fev1_l
Length:
8.3
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
be.en.hd.TextResult
Data element:
TextResult
number
FEF25-75 (l/s)
Technical specs
CSV column name:
lung_function|executed|fef2575_ls
Length:
8.3
Required:
false
Mapping of the clinical building blocks (indicative only)
Concept:
be.en.hd.TextResult
Data element:
TextResult

2.4 The best lung function of the year

Section help

Report the values of FEV1 in Litres of the highest value of FEV1% predicted of the year (according to your local references) measured before the use of a bronchodilator. Report the height of the patient measured at that date.

boolean

Is the best lung function the same as the last lung function?

Help

If you answer yes to this question, the values from the last lung function will be copied into the fields for the best lung function. Please note that if you afterwards correct this answer to 'no', the copied values are not removed. Also, if you first answer 'no' and then correct to 'yes', the values can no longer be copied.

Technical specs

CSV column name:

last_is_best

Only when:

Required:

false

Options

Label	Value
Yes	TRUE
No	FALSE

date

Date of best LungFx

Technical specs

Format:

DD/MM/YYYY

CSV column name:

date_of_best_lungfx

Only when:

Required:

true

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.TextResult

Data element:

TextResultDateTime

Validation

Year of the date of the best lung function must match with the year of the data collection (error)
Date of best LungFx cannot be after date of death ()
Date of best lung function cannot precede date of birth (error)
Date of best LungFx cannot be after the year of collection (error)

number

FVC (l)

Technical specs

CSV column name:

fvc_l

Length:

8.3

Only when:

Required:

true

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.TextResult

Data element:

TextResult

Validation

Lung function: FEV1 must be smaller than FVC (error)
Best lung function: FEV1 must be smaller than FVC (error)
FVC cannot contain more than 3 decimals (error)
FVC cannot contain more than 3 decimals (error)
Best lung function - FVC must be between 0,1 and 9 L (error)
Best lung function - FVC must be between 0,1 and 9 L (error)

number

FEV1 (l)

Technical specs

CSV column name:

fev1_l

Length:

8.3

Only when:

Required:

true

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.TextResult

Data element:

TextResult

Validation

Lung function: FEV1 must be smaller than FVC (error)
Best lung function: FEV1 must be smaller than FVC (error)
FEV1 cannot contain more than 3 decimals (error)
FEV1 cannot contain more than 3 decimals (error)
Best lung function - FEV1 must be between 0,1 and 9 L (error)
Best lung function - FEV1 must be between 0,1 and 9 L (error)

number

FEF25-75 (l/s)

Technical specs

CSV column name:

fef2575_ls

Length:

8.3

Only when:

Required:

false

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.TextResult

Data element:

TextResult

Validation

FEF25-75 cannot contain more than 3 decimals (error)
FEF25-75 cannot contain more than 3 decimals (error)
Best lung function - FEF25-75 must be between 0,1 and 9 L/s (error)
Best lung function - FEF25-75 must be between 0,1 and 9 L/s (error)

number

Weight (kg)

Technical specs

CSV column name:

weight_kg

Length:

8.3

Only when:

Required:

true

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.BodyWeight

Data element:

WeightValue

Validation

Weight cannot contain more than 3 decimals (error)
Best lung function - Patient weight must be between 0,80 and 150 Kg (error)
Best lung function - Patient weight must be between 0,80 and 150 Kg (error)

number

Height (cm)

Technical specs

CSV column name:

height_cm

Length:

8.1

Only when:

Required:

true

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.BodyHeight

Data element:

HeightValue

Validation

Height cannot contain more than 1 decimal (error)
Best lung function - Patient height must be between 25 and 220 cm (error)
Best lung function - Patient height must be between 25 and 220 cm (error)

number

BMI

Not to be included in the CSV.

Technical specs

CSV column name:

bmi

Length:

8.1

Computed:

Only when:

Required:

false

2.5 Best post-transplantation lung function (time interval between the 2 functions >= 3 weeks)

Section help

Please report the 2 best lung functions ever after lung transplantation (time interval between the 2 functions ≥ 3 weeks).

fieldset

Best post-transplantation lung function 1

Fields

date

Date best post-transp LungFx 1

Technical specs

Format:

DD/MM/YYYY

CSV column name:

best_posttransplantation_lung_function_1|date_best_posttransp_lungfx_1

Required:

false

Stable:

true

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.TextResult

Data element:

TextResultDateTime

Validation

Year of the date of the best post-transplantation lung function must be <= the year of the data collection (error)
Date best post-transp LungFx 1 cannot be after date of death ()
Date of best post-transplantation lung function 1 cannot be before date of birth (error)
Date best post-transp LungFx 1 cannot be after the year of collection (error)

number

Weight best post-transp LungFx 1 (kg)

Technical specs

CSV column name:

best_posttransplantation_lung_function_1|weight_best_posttransp_lungfx_1_kg

Length:

8.3

Only when:

Required:

true

Stable:

true

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.BodyWeight

Data element:

WeightValue

Validation

Weight (best post-transplantation lung function 1) cannot contain more than 3 decimals (error)
Best post-transplantation lung function 1 - Patient weight must be between 0,80 and 150 Kg (error)
Best post-transplantation lung function 1 - Patient weight must be between 0,80 and 150 Kg (error)

number

Height best post-transp LungFx 1 (cm)

Technical specs

CSV column name:

best_posttransplantation_lung_function_1|height_best_posttransp_lungfx_1_cm

Length:

8.1

Only when:

Required:

true

Stable:

true

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.BodyHeight

Data element:

HeightValue

Validation

Height (best post-transplantation lung function 1) cannot contain more than 1 decimal (error)
Best post-transplantation lung function 1 - Patient height must be between 25 and 220 cm (error)
Best post-transplantation lung function 1 - Patient height must be between 25 and 220 cm (error)

number

FVC best post-transp LungFx 1 (l)

Technical specs

CSV column name:

best_posttransplantation_lung_function_1|fvc_best_posttransp_lungfx_1_l

Length:

8.3

Only when:

Required:

true

Stable:

true

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.TextResult

Data element:

TextResult

Validation

FVC (best post-transplantation lung function 1) cannot contain more than 3 decimals (error)
Best post-transplantation lung function 1 - FVC must be between 0,1 and 9 L (error)
Best post-transplantation lung function 1 - FVC must be between 0,1 and 9 L (error)

number

FEV1 best post-transp LungFx 1 (l)

Technical specs

CSV column name:

best_posttransplantation_lung_function_1|fev1_best_posttransp_lungfx_1_l

Length:

8.3

Only when:

Required:

true

Stable:

true

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.TextResult

Data element:

TextResult

Validation

FEV1 (best post-transplantation lung function 1) cannot contain more than 3 decimals (error)
Best post-transplantation lung function 1 - FEV1 must be between 0,1 and 9 L (error)
Best post-transplantation lung function 1 - FEV1 must be between 0,1 and 9 L (error)

fieldset

Best post-transplantation lung function 2

Fields

date

Date best post-transp LungFx 2

Technical specs

Format:

DD/MM/YYYY

CSV column name:

best_posttransplantation_lung_function_2|date_best_posttransp_lungfx_2

Required:

false

Stable:

true

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.TextResult

Data element:

TextResultDateTime

Validation

Year of the date of the best post-transplantation lung function must be <= the year of the data collection (error)
Date best post-transp LungFx 2 cannot be after date of death ()
Date of best post-transplantation lung function 2 cannot be before date of birth (error)
Date best post-transp LungFx 2 cannot be after the year of collection (error)

number

Weight best post-transp LungFx 2 (kg)

Technical specs

CSV column name:

best_posttransplantation_lung_function_2|weight_best_posttransp_lungfx_2_kg

Length:

8.3

Only when:

Required:

true

Stable:

true

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.BodyWeight

Data element:

WeightValue

Validation

Weight (best post-transplantation lung function 2) cannot contain more than 3 decimals (error)
Best post-transplantation lung function 2 - Patient weight must be between 0,80 and 150 Kg (error)
Best post-transplantation lung function 2 - Patient weight must be between 0,80 and 150 Kg (error)

number

Height best post-transp LungFx 2 (cm)

Technical specs

CSV column name:

best_posttransplantation_lung_function_2|height_best_posttransp_lungfx_2_cm

Length:

8.1

Only when:

Required:

true

Stable:

true

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.BodyHeight

Data element:

HeightValue

Validation

Height (best post-transplantation lung function 2) cannot contain more than 1 decimal (error)
Best post-transplantation lung function 2 - Patient height must be between 25 and 220 cm (error)
Best post-transplantation lung function 2 - Patient height must be between 25 and 220 cm (error)

number

FVC best post-transp LungFx 2 (l)

Technical specs

CSV column name:

best_posttransplantation_lung_function_2|fvc_best_posttransp_lungfx_2_l

Length:

8.3

Only when:

Required:

true

Stable:

true

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.TextResult

Data element:

TextResult

Validation

FVC (best post-transplantation lung function 2) cannot contain more than 3 decimals (error)
Best post-transplantation lung function 2 - FVC must be between 0,1 and 9 L (error)
Best post-transplantation lung function 2 - FVC must be between 0,1 and 9 L (error)

number

FEV1 best post-transp LungFx 2 (l)

Technical specs

CSV column name:

best_posttransplantation_lung_function_2|fev1_best_posttransp_lungfx_2_l

Length:

8.3

Only when:

Required:

true

Stable:

true

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.TextResult

Data element:

TextResult

Validation

FEV1 (best post-transplantation lung function 2) cannot contain more than 3 decimals (error)
Best post-transplantation lung function 2 - FEV1 must be between 0,1 and 9 L (error)
Best post-transplantation lung function 2 - FEV1 must be between 0,1 and 9 L (error)

2.6 Lung clearance index

choice

Has the lung clearance index LCI 2.5% been evaluated this year?

Technical specs

CSV column name:

CD_LCI

Only when:

Required:

true

Options

Label	Value
No	1
Yes	2
Unknown	99

date

Date of the lung clearance index LCI

Technical specs

Format:

DD/MM/YYYY

CSV column name:

DT_LCI

Only when:

Required:

true

Validation

Date of the lung clearance index LCI cannot be after the year of collection (error)
Year of the LCI date must match with the year of the data collection (error)

number

Lowest value

Technical specs

CSV column name:

MS_LCI_LOW

Only when:

Required:

true

Validation

The Lowest value of LCI 2,5% must be between 2 and 35 (error)
The Lowest value of LCI 2,5% must be between 2 and 35 (error)

choice

Type of device

Technical specs

CSV column name:

CD_LCI_DEVICE

Only when:

Required:

true

Options

Label	Value
Ecomedics Exhalyzer D N2-Washout	1
Ecomedics Exhaler SF6 (Tracergas 4%)	2
Innovision Innocor	3
NDD Easyone Pro	4
Other	5
Unknown	99

3 Microbiology

3.1 Microbiology: all cultures of the registration year

Section help

This section is only available in case the patient has not received a transplant.

choice

Microbiology executed

Technical specs

CSV column name:

microbiology_executed

Only when:

Required:

true

Options

Label	Value
Executed	1
Not Executed	2
Missing Data	999

Validation

Microbiology - cultures of the registration year: the option "Missing values" cannot be combined with other options (error)

Nested option fields

When 1 Is selected:
multichoice
Cultures of the registration year
Technical specs
CSV column name:
microbiology_executed|cultures_of_the_registration_year
Required:
true
Options
Label Value
Swabs swabs
Sputum sputum
Broncho-alveolar lavage (BAL) bronchoalveolar_lavage_bal
Missing values missing_values

Label	Value
Swabs	swabs
Sputum	sputum
Broncho-alveolar lavage (BAL)	bronchoalveolar_lavage_bal
Missing values	missing_values

3.2 Pathogen ever found during the year

multichoice

Pathogen ever found during the year

Technical specs

CSV column name:

pathogen_ever_found_during_the_year

Only when:

Required:

true

Options

Label	Value
Pseudomonas aeruginosa	pseudomonas_aeruginosa
Burkholderia cepacia complex	burkholderia_cepacia_complex
Stenotrophomonas maltophilia	stenotrophomonas_maltophilia
Achromobacter xylosoxidans (Alcaligenes)	achromobacter_xylosoxidans_alcaligenes
Methicillin resistant staphylococcus aureus (MRSA)	methicillin_resistant_staphlylococcus_aureus_mrsa
Methicillin sensible staphylococcus aureus (MSSA)	methicillin_sensible_staphlylococcus_aureus_mssa
Haemophilus influenzae	haemophilus_influenzae
Aspergillus	aspergillus
Scedosporium prolificans	scedosporium_prolificans
Atypical Mycobaterium (NTM)	atypical_mycobaterium_ntm
(Pathogens) Other	pathogens_other
No pathogens	no_pathogens
(Pathogens) Missing Values	pathogens_missing_values

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.LaboratoryTestResult

Data element:

TestDateTime

Validation

Pathogen ever found during the year: the option "No pathogens" cannot be combined with other options (error)
Pathogen ever found during the year: the option "Missing values" cannot be combined with other options (error)

text

Please specify

Technical specs

CSV column name:

TX_PATHOG_OTH

Only when:

Required:

false

3.3 Colonisation

Section help

Definition of "chronic infection in the lower airways" 1. Chronic PA infection should be defined by local physician according to modified Leeds criteria and/or anti-pseudomonas antibodies. Patient should be defined as chronically infected if he/she fulfils the criteria now or in recent years and the physician have no reason to think the status has changed. 1.a. Modified Leeds criteria : Chronic infection : >50% of the sputum samples positive, collected during the last 12 months. At least 4 sputum samples during that period 1.b. and/or significantly raised anti-pseudomonas antibodies according to local laboratories. 2. Chronic infection with other gram-negative bacteria (e.g. Burkholderia spp, Achromobacter spp, Stenotrophomonas maltophilia) should be recorded by the same criteria as above with abstraction of specific antibodies. The 4 sputum samples should only be considered if they were taken during 4 different calendar months (all sputum samples in one calendar month are counted as one sample).

choice

Number of exploitable months (< or >= 4)

Help

Only 1 culture per month can be counted.

Technical specs

CSV column name:

number_of_exploitable_months__or__4

Only when:

Required:

true

Options

Label	Value
0	0
	1
>= 4	2
Missing data	999

choice

Pseudomonas colonisation

Technical specs

CSV column name:

pseudomonas_colonisation

Only when:

Required:

true

Options

Label	Value
No	1
Yes	2
Unknown status	9
Missing Data	999

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.LaboratoryTestResult

Data element:

Result

choice

B. cepacia compl. colonisation

Technical specs

CSV column name:

b_cepacia_compl_colonisation

Only when:

Required:

true

Options

Label	Value
No	1
Yes	2
Unknown status	9
Missing Data	999

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.LaboratoryTestResult

Data element:

Result

choice

Stenotrophomonas colonisation

Technical specs

CSV column name:

stenotrophomonas_colonisation

Only when:

Required:

true

Options

Label	Value
No	1
Yes	2
Unknown status	9
Missing Data	999

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.LaboratoryTestResult

Data element:

Result

choice

Achromobacter colonisation

Technical specs

CSV column name:

achromobacter_colonisation

Only when:

Required:

true

Options

Label	Value
No	1
Yes	2
Unknown status	9
Missing Data	999

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.LaboratoryTestResult

Data element:

Result

choice

MRSA colonisation

Technical specs

CSV column name:

mrsa_colonisation

Only when:

Required:

true

Options

Label	Value
No	1
Yes	2
Unknown status	9
Missing Data	999

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.LaboratoryTestResult

Data element:

Result

3.4 SARS-CoV-2 test performed this year

Section help

Negative if never positive, Positive if at least once positive (whatever the method)

choice

SARS-CoV-2 test performed this year

Technical specs

CSV column name:

CD_COVID

Only when:

Required:

true

Options

Label	Value
No	1
Yes, negative	2
Yes, positive	3
Unknown	99

4 Complications

Section help

Report the complications that occurred or still active in the registration year.

4.1 Respiratory causes

choice

Allergic broncho pulmonary aspergillosis

Help

Diagnostic criteria : 1. Acute or subacute clinical deterioration (cough, wheeze, exercise intolerance, exercise-induced asthma, change in pulmonary function, or increased sputum production) not attributable to another etiology. 2. Total IgE > 500 IU/ml 3. Positive skin prick test for Aspergillus antigen (> 3 mm) or positive specific IgE for A. fumigatus 4. Either (a) precipitins to A. fumigatus or in vitro demonstration of IgG antibody to A. fumigatus; or (b) new or recent abnormalities on chest radiography (infiltrates or mucus plugging) or chest CT bronchiectasies that have not cleared with antibiotics and standard physiotherapy.

Technical specs

CSV column name:

allergic_broncho_pulmonary_aspergillosis

Only when:

Required:

true

Options

Label	Value
No	1
Yes	2
Missing Data	999

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Problem

Data element:

ProblemName

Nested option fields

When 2 Is selected:

choice

ABPA Treated

Technical specs

CSV column name:

allergic_broncho_pulmonary_aspergillosis|abpa_treated

Required:

true

Options

Label	Value
No	1
Yes	2
Missing data	999

Nested option fields

When 2 Is selected:

multichoice

Treatment for ABPA

Technical specs

CSV column name:

allergic_broncho_pulmonary_aspergillosis|abpa_treated|treatment_for_abpa

Required:

true

Options

Label	Value
Oral steroids	1
Pulse steroids	pulse_steroids
Oral antifungal therapy	oral_antifungal_therapy
Inhaled antifungal therapy	inhaled_antifungal_therapy
Omalizumab	2
Anti-IL5	antiil5
Intravenous antifungal therapy	iv_antifungal_therapy
Other	other_abpa_therapy

choice

Pneumothorax

Technical specs

CSV column name:

pneumothorax

Only when:

Required:

true

Options

Label	Value
No	1
Yes	2
Missing Data	999

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Problem

Data element:

ProblemName

Nested option fields

When 2 Is selected:
choice
Pneumothorax treatment
Technical specs
CSV column name:
pneumothorax|CD_PNEUTH
Only when:
Required:
true
Options
Label Value
Treated with chest drain 1
Observation only 2
Treatment unknown 99

Label	Value
Treated with chest drain	1
Observation only	2
Treatment unknown	99

choice

Nasal polyps (having required/requiring therapy)

Technical specs

CSV column name:

nasal_polyps_having_requiredrequiring_therapy

Only when:

Required:

true

Options

Label	Value
No	1
Yes	2
Missing Data	999

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Problem

Data element:

ProblemName

choice

Massive haemoptysis

Help

A massive haemoptysis is a blood loss> 250cc/24h or requiring a transfusion.

Technical specs

CSV column name:

massive_haemoptysis

Only when:

Required:

true

Options

Label	Value
No	1
Yes	2
Missing Data	999

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Problem

Data element:

ProblemName

Nested option fields

When 2 Is selected:
choice
Requiring embolization
Technical specs
CSV column name:
massive_haemoptysis|requiring_embolization
Required:
true
Options
Label Value
No 1
Yes 2
Missing Data 999
Mapping of the clinical building blocks (indicative only)
Concept:
be.en.hd.Procedure
Data element:
ProcedureType

Label	Value
No	1
Yes	2
Missing Data	999

choice

Bronchiectasis

Technical specs

CSV column name:

bronchiectasis

Only when:

Required:

true

Options

Label	Value
No CT scan this year	1
CT scan done, no bronchiectasis	2
CT scan done, bronchiectasis	3
CT scan done, result unknown	4
Missing Data	999

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Problem

Data element:

ProblemName

4.2 Digestive causes

choice

CF diabetes

Help

IGT (Impaired glucose tolerance) - 2h plasma glucose (PG) >7.8 mmol/l (140 mg/dl) and < 11.0 mmol/l (200 mg/dL) during OGTT. CFRD (CF related diabetes mellitus) - 2h plasma glucose (PG) > 11.1 mmol/l (200 mg/dL) during OGTT - Fasting PG > 7 mmol /l (126 mg/dL) on 2 or more occasions - Fasting PG > 7 mmol /l ( 126 mg/dL) plus casual PG > 11.1 mmol/l (200 mg/dL) regardless time or last meal - Casual PG > 11.1 mmol/l (200 mg/dL) on 2 or more occasions with symptoms.

Technical specs

CSV column name:

cf_diabetes

Only when:

Required:

true

Options

Label	Value
No	1
IGT	2
CFRD	3
Missing Data	999

Validation

Patient has CF related diabetes and does not receive insulin or oral therapy for diabetes or diet only (for diabetes) (error)

choice

OGTT done this year

Technical specs

CSV column name:

ogtt_done_this_year

Only when:

Required:

true

Options

Label	Value
No	1
Yes	2
Missing Data	999

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.TextResult

Data element:

Procedure::Procedure

choice

Acute pancreatitis

Help

Episode of acute abdominal pain associated with serum amylase levels more than 1.5 times the upper limit of normal established by the laboratory.

Technical specs

CSV column name:

acute_pancreatitis

Only when:

Required:

true

Options

Label	Value
No	1
Yes	2
Missing Data	999

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Problem

Data element:

ProblemName

choice

Cirrhosis with portal hypertension

Help

Portal hypertension: Splenomegaly on palpation or Reversed flow (hepatofugal) in portal vein on echo Doppler or Oesophageal varices or collateral veins on echo Doppler or history of hematemesis.

Technical specs

CSV column name:

cirrhosis_with_portal_hypertension

Only when:

Required:

true

Options

Label	Value
No	1
Yes	2
Missing Data	999

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Problem

Data element:

ProblemName

choice

Intestinal obstruction: requiring surgery

Help

Episode of abdominal pain and distension with palpable right lower quadrant mass and signs of intestinal obstruction (vomiting or air fluid level on plain abdominal X-ray).

Technical specs

CSV column name:

intestinal_obstruction_requiring_surgery

Only when:

Required:

true

Options

Label	Value
No	1
Yes	2
Missing Data	999

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Problem

Data element:

ProblemName

choice

Intestinal obstruction: not requiring surgery

Help

Episode of abdominal pain and distension with palpable right lower quadrant mass and signs of intestinal obstruction (vomiting or air fluid level on plain abdominal X-ray).

Technical specs

CSV column name:

intestinal_obstruction_not_requiring_surgery

Only when:

Required:

true

Options

Label	Value
No	1
Yes	2
Missing Data	999

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Problem

Data element:

ProblemName

choice

Clostridium

Help

To report only if a treatment has been initiated.

Technical specs

CSV column name:

clostridium

Only when:

Required:

true

Options

Label	Value
No	1
Yes	2
Missing Data	999

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Problem

Data element:

ProblemName

4.3 Other complications

choice

CF related arthritis/arthropathy

Technical specs

CSV column name:

cf_related_arthritisarthropathy

Only when:

Required:

true

Options

Label	Value
No	1
Yes	2
Missing Data	999

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Problem

Data element:

ProblemName

choice

Osteopenia / Osteoporosis

Help

Report the lowest z-score found on the protocol of densitometry and the date of the most recent one.

Technical specs

CSV column name:

osteopenia__osteoporosis

Only when:

Required:

true

Stable:

true

Options

Label	Value
z-score>=-1	1
z-score -2,5	2
z-score	3
Not done	4
Missing Data	999

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Problem

Data element:

ProblemName

Validation

If the year of most recent DEXA is equal to the year of the data collection, Osteopenia / Osteoporosis should not be equal to "Not done" (error)

date

Date of most recent DEXA

Technical specs

Format:

DD/MM/YYYY

CSV column name:

date_of_most_recent_dexa

Only when:

Required:

if_z-score_has_been_defined

Stable:

true

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.TextResult

Data element:

TextResultDateTime

Validation

Year of the DEXA date must be smaller or equal to the year of the data collection (error)
Date of most recent DEXA cannot be after date of death (error)
Date of most recent DEXA should be within 5 years before the period start date (error)
Date of most recent DEXA cannot be before date of birth (error)
If the year of most recent DEXA is equal to the year of the data collection, Osteopenia / Osteoporosis should not be equal to "Not done" (error)
Date of most recent DEXA (error)

choice

Salt loss syndrome

Help

Primary metabolic alkalosis with blood pH > 7.45, serum sodium < 130 mmol/L and serum chloride < 90 mmol/L

Technical specs

CSV column name:

CD_SALTLOSS

Only when:

Required:

true

Options

Label	Value
No	1
Yes	2
Missing	999

choice

Cancer

Technical specs

CSV column name:

cancer

Only when:

Required:

true

Options

Label	Value
No	1
Yes	2
In remission	3
Missing Data	999

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Problem

Data element:

ProblemName

Validation

Cause of death : the option "Cause unknown" cannot be combined with other options (error)

choice

Type of cancer

Technical specs

CSV column name:

type_of_cancer

Only when:

Required:

true

Options

Label	Value
Colorectal cancer	1
Small bowel cancer	2
Lymphoid leukemia	3
Testicular cancer	4
Breast cancer	5
Thyroid gland cancer	6
Other	7
Unknown	99

Nested option fields

When 7 Is selected:
text
Specify
Technical specs
CSV column name:
type_of_cancer|specify
Length:
255
Required:
false

choice

Hypertension treated

Technical specs

CSV column name:

hypertension_treated

Only when:

Required:

true

Options

Label	Value
No	1
Yes	2
Missing Data	999

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Problem

Data element:

ProblemName

choice

Other complications

Technical specs

CSV column name:

other_complications

Only when:

Required:

true

Options

Label	Value
No	1
Yes	2
Missing Data	999

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Problem

Data element:

ProblemName

Nested option fields

When 2 Is selected:
text
Type
Technical specs
CSV column name:
other_complications|type
Length:
255
Required:
true

4.4 Renal function

fieldset

Renal function (last consultation of the year)

Fields

date

Date

Technical specs

Format:

DD/MM/YYYY

CSV column name:

renal_function_last_consultation_of_the_year|date

Required:

false

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.LaboratoryTestResult

Data element:

TestDateTime

Validation

Year of the date of the renal function must match with the year of the data collection (error)
Date of renal function (last consultation of the year) cannot be after date of death ()
Date of renal function (last consultation of the year) cannot be before date of birth (error)
Renal function (last consultation of the year) cannot be after the year of collection (error)

number

Creatinine (mg/dl)

Technical specs

CSV column name:

renal_function_last_consultation_of_the_year|creatinine_mgdl

Length:

8.3

Only when:

Required:

false

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.LaboratoryTestResult

Data element:

Result

Validation

Creatinine cannot contain more than 3 decimals (error)
Creatinine (last consultation of the year) must be between 0.1 and 10 mg/dl (error)
Creatinine (last consultation of the year) must be between 0.1 and 10 mg/dl (error)

fieldset

Renal function (1 month post-transplantation)

Fields

date

Date

Technical specs

Format:

DD/MM/YYYY

CSV column name:

renal_function_1_month_posttransplantation|date

Required:

false

Stable:

true

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.LaboratoryTestResult

Data element:

TestDateTime

Validation

Date of renal function (1 month post-transplantation) cannot be after date of death (error)
Date of renal function (1 month post-transplantation) cannot be before date of birth (error)
Date Renal function (1 month post-transplantation). should be equal or lower to year of collection (error)
Renal function (1 month post-transplantation) cannot be after the year of collection (error)

number

Creatinine (mg/dl)

Technical specs

CSV column name:

renal_function_1_month_posttransplantation|creatinine_mgdl

Length:

8.3

Only when:

Required:

false

Stable:

true

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.LaboratoryTestResult

Data element:

Result

Validation

Creatinine cannot contain more than 3 decimals (error)
Creatinine (1 month post-transplantation) must be between 0.1 and 10 mg/dl (error)
Creatinine (1 month post-transplantation) must be between 0.1 and 10 mg/dl (error)

4.5 Post-transplantation complications

multichoice

Chronic lung allograft dysfunction (CLAD)

Technical specs

CSV column name:

chronic_lung_allograft_dysfunction_clad

Only when:

Required:

true

Options

Label	Value
No	no
Bronchiolitis Obliterans Syndrome (BOS)	bronchiolitis_obliterans_syndrome_bos
Restrictive allograft syndrome (RAS)	restrictive_allograft_syndrome_ras
Not possible to classify	not_possible_to_classify

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Problem

Data element:

ProblemName

Nested option fields

When bronchiolitis_obliterans_syndrome_bos Is selected:
choice
BOS type
Technical specs
CSV column name:
chronic_lung_allograft_dysfunction_clad|bos_type
Required:
true
Options
Label Value
BOS 0-p 1
BOS 1 2
BOS 2 3
BOS 3 4
Not classified 5

Validation

Post-transplantation complications - CLAD: the option "No" cannot be combined with other options (error)
Post-transplantation complications - CLAD: the option "Not possible to classify" cannot be combined with other options (error)

choice

Post-transplant lympho-proliferative disease

Technical specs

CSV column name:

posttransplant_lymphoproliferative_disease

Only when:

Required:

true

Options

Label	Value
No	1
Yes	2
In remission	3
Missing Data	999

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Problem

Data element:

ProblemName

5 Therapy

5.1 Therapy received during the year of registration

choice

Number Consultations (< or >= 4)

Help

Indicate the number of consultations in the year of registration. Enter '0 'if the patient has not been seen in consultation. Multidisciplinary consultations.

Technical specs

CSV column name:

number_consultations__or__4

Only when:

Required:

true

Options

Label	Value
0	0
	1
>= 4	2
Missing data	999

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Encounter

Data element:

number

Days in hospital

Help

Indicate the number of days of hospitalization in the year of registration. Enter '0 'if the patient was not hospitalized. Count hospitalizations lasting more than 24 hours with at least one night. Do not count the days in a rehabilitation center. Enter '999' if missing data. Enter '99999' if no data.

Technical specs

CSV column name:

days_in_hospital

Length:

Only when:

Required:

true

Validation

Days iv in hospital cannot be higher than Days in hospital (error)
Days in hospital must be between 0 and 366 (included) (error)
Days in hospital must be between 0 and 366 (included) (error)

number

Days in revalidation center

Technical specs

CSV column name:

MS_REVALCENT

Only when:

Required:

true

Validation

Days iv in revalidation center cannot be higher than Days in revalidation center (error)
Days in revalidation center must be between 0 and 366 (included) (error)
Days in revalidation center must be between 0 and 366 (included) (error)

5.2 Respiratory system

choice

Systemic antibiotics

Technical specs

CSV column name:

systemic_antibiotics

Only when:

Required:

true

Options

Label	Value
No	1
per os	2
iv	3
per os + iv	4
Missing Data	999

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.MedicationAgreement

Data element:

AgreedMedicine::Product

Validation

Days iv at home, days iv in hospital and days iv in revalidation center cannot be all equal to zero (error)

choice

Days per os

Help

Do not count Azithromycine.

Technical specs

CSV column name:

days_per_os

Only when:

Required:

true

Options

Label	Value
	2
1 - 3 months	3
3 - 6 months	4
> 6 months	5
Missing Data	999

number

Days iv at home

Technical specs

CSV column name:

days_iv_at_home

Length:

Only when:

Required:

true

Validation

Days iv at home, days iv in hospital and days iv in revalidation center cannot be all equal to zero (error)
Days iv at home must be between 0 and 366 (included) (error)
Days iv at home must be between 0 and 366 (included) (error)

number

Days iv in hospital

Technical specs

CSV column name:

days_iv_in_hospital

Length:

Only when:

Required:

true

Validation

Days iv at home, days iv in hospital and days iv in revalidation center cannot be all equal to zero (error)
Days iv in hospital cannot be higher than Days in hospital (error)
Days iv in hospital must be between 0 and 366 (included) (error)
Days iv in hospital must be between 0 and 366 (included) (error)

number

Days iv in revalidation center

Technical specs

CSV column name:

MS_IV_REVALCENT

Only when:

Required:

false

Validation

Days iv at home, days iv in hospital and days iv in revalidation center cannot be all equal to zero (error)
Days iv in revalidation center cannot be higher than Days in revalidation center (error)
Days iv in revalidation center must be between 0 and 366 (included) (error)
Days iv in revalidation center must be between 0 and 366 (included) (error)

choice

Inhaled antibiotics

Help

> 3 months (consecutive or on/off)

Technical specs

CSV column name:

inhaled_antibiotics

Only when:

Required:

true

Options

Label	Value
No	1
Yes	2
Missing Data	999

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.MedicationAgreement

Data element:

AgreedMedicine::Product

choice

Home O2-therapy

Help

> 3 months continuous

Technical specs

CSV column name:

home_o2therapy

Only when:

Required:

true

Options

Label	Value
No	1
At Night	2
Day and Night	3
Day / on demand	4
Missing Data	999

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.MedicationAgreement

Data element:

AgreedMedicine::Product

choice

Continuous NIPPV (non-invasive positive pressure ventilation)

Help

> 3 months continuous, for CF reasons

Technical specs

CSV column name:

CD_NIPPV

Only when:

Required:

true

Options

Label	Value
No	1
CPAP	2
BiPAP	3
CPAP+BiPAP	4
Unknown	99

choice

Inhalation therapy (except antibiotics)

Help

> 3 months

Technical specs

CSV column name:

inhalation_therapy_except_antibiotics

Only when:

Required:

true

Options

Label	Value
No	1
Yes	2
Missing data	999

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Procedure

Data element:

ProcedureType

Validation

Inhalation therapy: if answer is yes, at least one of the following therapies should be yes: RhDnase, Mucolytics, Bronchodilators, Corticosteroids, Hypertonic saline (error)

Nested option fields

When 2 Is selected:
choice
RhDnase
Technical specs
CSV column name:
inhalation_therapy_except_antibiotics|rhdnase
Required:
true
Options
Label Value
No 1
Yes 2
Mapping of the clinical building blocks (indicative only)
Concept:
be.en.hd.MedicationAgreement
Data element:
AgreedMedicine::Product
choice
Other mucolytics
Technical specs
CSV column name:
inhalation_therapy_except_antibiotics|mucolytics
Required:
true
Options
Label Value
No 1
Yes 2
Mapping of the clinical building blocks (indicative only)
Concept:
be.en.hd.MedicationAgreement
Data element:
AgreedMedicine::Product
choice
Bronchodilators
Technical specs
CSV column name:
inhalation_therapy_except_antibiotics|bronchodilators
Required:
true
Options
Label Value
No 1
Yes, short-acting only 3
Yes, long-acting only 4
Yes, short- and long-acting 5
Mapping of the clinical building blocks (indicative only)
Concept:
be.en.hd.MedicationAgreement
Data element:
AgreedMedicine::Product
choice
Corticosteroids
Technical specs
CSV column name:
inhalation_therapy_except_antibiotics|corticosteroids
Required:
true
Options
Label Value
No 1
Yes 2
Mapping of the clinical building blocks (indicative only)
Concept:
be.en.hd.MedicationAgreement
Data element:
AgreedMedicine::Product
choice
Hypertonic saline
Help
At concentration > 3%
Technical specs
CSV column name:
inhalation_therapy_except_antibiotics|hypertonic_saline
Required:
true
Options
Label Value
No no
Yes yes
Mapping of the clinical building blocks (indicative only)
Concept:
be.en.hd.MedicationAgreement
Data element:
AgreedMedicine::Product

choice

Antiinflammatories p.o

Technical specs

CSV column name:

antiinflammatories_po

Only when:

Required:

true

Options

Label	Value
No	1
Yes	5
Missing data	999

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.MedicationAgreement

Data element:

AgreedMedicine::Product

Validation

Antiinflammatories p.o.: If answer is yes, at least one of the following therapies should be yes: NSAID, Systemic corticoids, azithromycine, anti-leucotriens, other (error)

Nested option fields

When 5 Is selected:
choice
NSAID
Technical specs
CSV column name:
antiinflammatories_po|nsaid
Only when:
Required:
true
Options
Label Value
No 1
Yes 2
Mapping of the clinical building blocks (indicative only)
Concept:
be.en.hd.MedicationAgreement
Data element:
AgreedMedicine::Product
choice
Systemic Corticoids
Technical specs
CSV column name:
antiinflammatories_po|systemic_corticoids
Only when:
Required:
true
Options
Label Value
No 1
Yes 2
Mapping of the clinical building blocks (indicative only)
Concept:
be.en.hd.MedicationAgreement
Data element:
AgreedMedicine::Product
choice
Azithromycine
Help
Azithromycin or other macrolide
Technical specs
CSV column name:
antiinflammatories_po|azithromycine
Required:
true
Options
Label Value
No 1
Yes 2
choice
Anti-leucotriens
Technical specs
CSV column name:
antiinflammatories_po|CD_INFLAMM_LEUKAS
Required:
true
Options
Label Value
No 1
Yes 2
choice
Other
Technical specs
CSV column name:
antiinflammatories_po|other
Required:
false
Options
Label Value
No 1
Yes 2
Nested option fields
- When 2 Is selected:
  text
  Specify other anti-inflammatories
  Technical specs
  CSV column name:
  antiinflammatories_po|other|TX_INFLAMM_OTH
  Required:
  false

choice

Azithromycine/macrolide

Technical specs

CSV column name:

CD_AZI

Only when:

Required:

true

Options

Label	Value
No	1
Yes	2

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.MedicationAgreement

Data element:

AgreedMedicine::Product

5.3 Digestive system

choice

Pancreatic sufficient

Help

Fat absorption >93% in a stool sample of 3 days. Fat loss <7 g/day. Faecal elastase >200 mcg/g of feces. Absence of clinical symptoms.

Technical specs

CSV column name:

pancreatic_sufficient

Only when:

Required:

true

Stable:

true

Options

Label	Value
No	1
Yes	2
Missing Data	999

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Problem

Data element:

choice

Pancreatic enzymes

Help

> 3 months continuous

Technical specs

CSV column name:

pancreatic_enzymes

Only when:

Required:

true

Stable:

true

Options

Label	Value
No	1
Yes	2
Missing Data	999

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.MedicationAgreement

Data element:

AgreedMedicine::Product

choice

Ursodeoxycholic acid

Help

> 3 months continuous

Technical specs

CSV column name:

ursodeoxycholic_acid

Only when:

Required:

true

Options

Label	Value
No	1
Yes	2
Missing Data	999

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.MedicationAgreement

Data element:

AgreedMedicine::Product

choice

Tube feeding

Technical specs

CSV column name:

tube_feeding

Only when:

Required:

true

Options

Label	Value
No	1
Yes	6
Missing Data	999

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Procedure

Data element:

ProcedureType

choice

Gastrostomy

Technical specs

CSV column name:

gastrostomy

Only when:

Required:

true

Options

Label	Value
No	1
Yes	2
Missing Data	999

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Procedure

Data element:

ProcedureType

choice

Parenteral feeding

Technical specs

CSV column name:

parenteral_feeding

Only when:

Required:

true

Options

Label	Value
No	1
Yes	2
Missing Data	999

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Procedure

Data element:

ProcedureType

5.4 Miscellaneous

choice

Oral therapy for diabetes

Technical specs

CSV column name:

oral_therapy_for_diabetes

Only when:

Required:

true

Options

Label	Value
No	1
Yes	2
Missing Data	999

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.MedicationAgreement

Data element:

AgreedMedicine::Product

Validation

Patient has CF related diabetes and does not receive insulin or oral therapy for diabetes or diet only (for diabetes) (error)

choice

Insulin therapy

Technical specs

CSV column name:

insulin_therapy

Only when:

Required:

true

Options

Label	Value
No	1
Yes	2
Missing Data	999

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.MedicationAgreement

Data element:

AgreedMedicine::Product

Validation

Patient has CF related diabetes and does not receive insulin or oral therapy for diabetes or diet only (for diabetes) (error)

choice

Diet only (for diabetes)

Technical specs

CSV column name:

CD_DIET

Only when:

Required:

true

Options

Label	Value
No	1
Yes	2
Missing data	999

Validation

Patient has CF related diabetes and does not receive insulin or oral therapy for diabetes or diet only (for diabetes) (error)

choice

PPI + H2 receptor blocker

Help

> 3 months

Technical specs

CSV column name:

ppi__h2_receptor_blocker

Only when:

Required:

true

Options

Label	Value
No	1
Yes	2
Missing Data	999

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.MedicationAgreement

Data element:

AgreedMedicine::Product

choice

Anticonceptive therapy

Technical specs

CSV column name:

anticonceptive_therapy

Only when:

, ,

Required:

true

Options

Label	Value
No	1
Yes	2
Missing Data	999

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.MedicationAgreement

Data element:

AgreedMedicine::Product

choice

Bisphosphonates

Technical specs

CSV column name:

bisphosphonates

Only when:

Required:

true

Options

Label	Value
No	1
Yes	2
Missing Data	999

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.MedicationAgreement

Data element:

AgreedMedicine::Product

choice

Randomised drug trial

Technical specs

CSV column name:

randomised_drug_trial

Only when:

Required:

true

Options

Label	Value
No	1
Yes	2
Missing Data	999

choice

CFTR modulating therapy

Technical specs

CSV column name:

cftr_modulating_therapy

Only when:

Required:

true

Stable:

true

Options

Label	Value
No	1
Yes	2
Missing Data	999

Validation

Start date ivacaftor cannot be after the year of collection (error)
Stop date ivacaftor should be during the year of collection (error)
Start date Lumacaftor/ivacaftor cannot be after the year of collection (error)
Stop date Lumacaftor/ivacaftor should be during the year of collection (error)
Start date Tezacaftor/ivacaftor cannot be after the year of collection (error)
Stop date Tezacaftor/ivacaftor should be during the year of collection (error)
Start date Elexacaftor/tezacaftor/ivacaftor cannot be after the year of collection (error)
Stop date Elexacaftor/tezacaftor/ivacaftor should be during the year of collection (error)
Start date other CFTR modulating therapy cannot be after the year of collection (error)
Stop date other CFTR modulating therapy should be during the year of collection (error)
Stop date Ivacaftor cannot be before start date (error)
Start date Ivacaftor cannot be before date of birth (error)
Start date Ivacaftor cannot be after date of death (error)
Stop date Ivacaftor cannot be after date of death (error)
Stop date Lumacaftor/ivacaftor cannot be before start date (error)
Start date Lumacaftor/ivacaftor cannot be before date of birth (error)
Start dateLumacaftor/ivacaftor cannot be after date of death (error)
Stop date Lumacaftor/ivacaftor cannot be after date of death (error)
Stop date Tezacaftor/ivacaftor cannot be before start date (error)
Start date Tezacaftor/ivacaftor cannot be before date of birth (error)
Start date Tezacaftor/ivacaftor cannot be after date of death (error)
Stop date Tezacaftor/ivacaftor cannot be after date of death (error)
Stop date Elexacaftor/tezacaftor/ivacaftor cannot be before start date (error)
Start date Elexacaftor/tezacaftor/ivacaftor cannot be before date of birth (error)
Start date Elexacaftor/tezacaftor/ivacaftor cannot be after date of death (error)
Stop date Elexacaftor/tezacaftor/ivacaftor cannot be after date of death (error)
Stop date Blinded clinical trial cannot be before start date (error)
Start date Blinded clinical trial cannot be before date of birth (error)
Start date Blinded clinical trial cannot be after date of death (error)
Start date Blinded clinical trial cannot be after year of collection (error)
Stop date Blinded clinical trial cannot be after date of death (error)
Stop date Blinded clinical trial should be during the year of collection (error)
Stop date Other CFTR modulating therapy cannot be before start date (error)
Start date Other CFTR modulating therapy cannot be before date of birth (error)
Start date Other CFTR modulating therapy cannot be after date of death (error)
Stop date Other CFTR modulating therapy cannot be after date of death (error)
You indicated a switch to another CFTR modulator (reason stop Ivacaftor) but no other CFTR modulator molecule or blinded trial has been selected (error)
You indicated a switch to another CFTR modulator (reason stop Lumacaftor/Ivacaftor) but no other CFTR modulator molecule or blinded trial has been selected (error)
You indicated a switch to another CFTR modulator (reason stop Tezacaftor/Ivacaftor) but no other CFTR modulator molecule or blinded trial has been selected (error)
You indicated a switch to another CFTR modulator (reason stop Elexacaftor/Tezacaftor/Ivacaftor) but no other CFTR modulator molecule or blinded trial has been selected (error)

multichoice

CFTR modulating therapy

Technical specs

CSV column name:

cftr_modulating_therapy_1

Only when:

Required:

true

Stable:

true

Options

Label	Value
Ivacaftor	1
Lumacaftor/ivacaftor	2
Tezacaftor/ivacaftor	3
Elexacaftor/tezacaftor/ivacaftor	6
Blinded clinical trial	4
Other	5

Nested option fields

When 1 Is selected:

date

Start date ivacaftor

Technical specs

Format:

DD/MM/YYYY

CSV column name:

cftr_modulating_therapy_1|DT_IVA_START

Required:

false

Stable:

true

choice

Ivacaftor ongoing

Technical specs

CSV column name:

cftr_modulating_therapy_1|CD_IVA_CONTNG

Required:

false

Options

Label	Value
No	1
Yes	2

Nested option fields

When 1 Is selected:

date

Stop date ivacaftor

Technical specs

Format:

DD/MM/YYYY

CSV column name:

cftr_modulating_therapy_1|CD_IVA_CONTNG|DT_IVA_STP

Required:

false

multichoice

Reason for stop ivacaftor

Technical specs

CSV column name:

cftr_modulating_therapy_1|CD_IVA_CONTNG|CD_IVA_STP_REAS

Required:

false

Options

Label	Value
Side effect	FL_IVA_STP_REAS_AE
Contraindication	FL_IVA_STP_REAS_CONTRA_INDICATN
Switch to another CFTR modulator	FL_IVA_STP_REAS_SWITCH
End clinical trial	IVA_STP_REAS_END_CTR
Other	IVA_STP_REAS_OTH
Unknown	IVA_STP_REAS_UNK

When 2 Is selected:

date

Start date Lumacaftor/ivacaftor

Technical specs

Format:

DD/MM/YYYY

CSV column name:

cftr_modulating_therapy_1|DT_LUMIVA_START

Required:

false

Stable:

true

choice

Lumacaftor/ivacaftor ongoing

Technical specs

CSV column name:

cftr_modulating_therapy_1|CD_LUMIVA_CONTNG

Required:

false

Options

Label	Value
No	1
Yes	2

Nested option fields

When 1 Is selected:

date

Stop date Lumacaftor/ivacaftor

Technical specs

Format:

DD/MM/YYYY

CSV column name:

cftr_modulating_therapy_1|CD_LUMIVA_CONTNG|DT_LUMIVA_STP

Required:

false

multichoice

Reason for stop Lumacaftor/ivacaftor

Technical specs

CSV column name:

cftr_modulating_therapy_1|CD_LUMIVA_CONTNG|CD_LUMIVA_STP_REAS

Required:

false

Options

Label	Value
Side effect	FL_LUMIVA_STP_REAS_AE
Contraindication	FL_LUMIVA_STP_REAS_CONTRA_INDICATN
Switch to another CFTR modulator	FL_LUMIVA_STP_REAS_SWITCH
End clinical trial	FL_LUMIVA_STP_REAS_END_CTR
Other	FL_LUMIVA_STP_REAS_OTH
Unknown	FL_LUMIVA_STP_REAS_UNK

When 3 Is selected:

date

Start date Tezacaftor/ivacaftor

Technical specs

Format:

DD/MM/YYYY

CSV column name:

cftr_modulating_therapy_1|DT_TEZIVA_START

Required:

false

Stable:

true

choice

Tezacaftor/ivacaftor ongoing

Technical specs

CSV column name:

cftr_modulating_therapy_1|CD_TEZIVA_CONTNG

Required:

false

Options

Label	Value
No	1
Yes	2

Nested option fields

When 1 Is selected:

date

Stop date Tezacaftor/ivacaftor

Technical specs

Format:

DD/MM/YYYY

CSV column name:

cftr_modulating_therapy_1|CD_TEZIVA_CONTNG|DT_TEZIVA_STP

Required:

false

multichoice

Reason for stop Tezacaftor/ivacaftor

Technical specs

CSV column name:

cftr_modulating_therapy_1|CD_TEZIVA_CONTNG|CD_TEZIVA_STP_REAS

Required:

false

Options

Label	Value
Side effect	FL_TEZIVA_STP_REAS_AE
Contraindication	FL_TEZIVA_STP_REAS_CONTRA_INDICATN
Switch to another CFTR modulator	FL_TEZIVA_STP_REAS_SWITCH
End clinical trial	FL_TEZIVA_STP_REAS_END_CTR
Other	FL_TEZIVA_STP_REAS_OTH
Unknown	FL_TEZIVA_STP_REAS_UNK

When 6 Is selected:

date

Start date Elexacaftor/tezacaftor/ivacaftor

Technical specs

Format:

DD/MM/YYYY

CSV column name:

cftr_modulating_therapy_1|DT_ELEXTEZIVA_START

Required:

false

Stable:

true

choice

Elexacaftor/tezacaftor/ivacaftor ongoing

Technical specs

CSV column name:

cftr_modulating_therapy_1|CD_ELEXTEZIVA_CONTNG

Required:

false

Options

Label	Value
No	1
Yes	2

Nested option fields

When 1 Is selected:

date

Stop date Elexacaftor/tezacaftor/ivacaftor

Technical specs

Format:

DD/MM/YYYY

CSV column name:

cftr_modulating_therapy_1|CD_ELEXTEZIVA_CONTNG|DT_ELEXTEZIVA_STP

Required:

false

multichoice

Reason for stop Elexacaftor/tezacaftor/ivacaftor

Technical specs

CSV column name:

cftr_modulating_therapy_1|CD_ELEXTEZIVA_CONTNG|CD_ELEXTEZIVA_STP_REAS

Required:

false

Options

Label	Value
Side effect	FL_ELEXTEZIVA_STP_REAS_AE
Contraindication	FL_ELEXTEZIVA_STP_REAS_CONTRA_INDICATN
Switch to another CFTR modulator	FL_ELEXTEZIVA_STP_REAS_SWITCH
End clinical trial	FL_ELEXTEZIVA_STP_REAS_END_CTR
Other	FL_ELEXTEZIVA_STP_REAS_OTH
Unknown	FL_ELEXTEZIVA_STP_REAS_UNK

When 4 Is selected:
date
Start date blinded clinical trial
Technical specs
Format:
DD/MM/YYYY
CSV column name:
cftr_modulating_therapy_1|DT_CTR_START
Required:
false
Stable:
true
choice
Blinded clinical trial ongoing
Technical specs
CSV column name:
cftr_modulating_therapy_1|CD_CTR_CONTNG
Required:
false
Options
Label Value
No 1
Yes 2
Nested option fields
- When 1 Is selected:
  date
  Stop date blinded clinical trial
  Technical specs
  Format:
  DD/MM/YYYY
  CSV column name:
  cftr_modulating_therapy_1|CD_CTR_CONTNG|DT_CTR_STP
  Required:
  false
When 5 Is selected:
text
Specify
Technical specs
CSV column name:
cftr_modulating_therapy_1|specify
Length:
255
Required:
true
Stable:
true
date
Start date other CFTR modulating therapy
Technical specs
Format:
DD/MM/YYYY
CSV column name:
cftr_modulating_therapy_1|DT_CFTR_OTH_START
Required:
false
Stable:
true
choice
Other CFTR modulating therapy ongoing
Technical specs
CSV column name:
cftr_modulating_therapy_1|CD_CFTR_OTH_CONTNG
Required:
false
Options
Label Value
No 1
Yes 2
Nested option fields
- When 1 Is selected:
  date
  Stop date other CFTR modulating therapy
  Technical specs
  Format:
  DD/MM/YYYY
  CSV column name:
  cftr_modulating_therapy_1|CD_CFTR_OTH_CONTNG|DT_CFTR_OTH_STP
  Required:
  false

Validation

Start date ivacaftor cannot be after the year of collection (error)
Stop date ivacaftor should be during the year of collection (error)
Start date Lumacaftor/ivacaftor cannot be after the year of collection (error)
Stop date Lumacaftor/ivacaftor should be during the year of collection (error)
Start date Tezacaftor/ivacaftor cannot be after the year of collection (error)
Stop date Tezacaftor/ivacaftor should be during the year of collection (error)
Start date Elexacaftor/tezacaftor/ivacaftor cannot be after the year of collection (error)
Stop date Elexacaftor/tezacaftor/ivacaftor should be during the year of collection (error)
Start date other CFTR modulating therapy cannot be after the year of collection (error)
Stop date other CFTR modulating therapy should be during the year of collection (error)
Stop date Ivacaftor cannot be before start date (error)
Start date Ivacaftor cannot be before date of birth (error)
Start date Ivacaftor cannot be after date of death (error)
Stop date Ivacaftor cannot be after date of death (error)
Stop date Lumacaftor/ivacaftor cannot be before start date (error)
Start date Lumacaftor/ivacaftor cannot be before date of birth (error)
Start dateLumacaftor/ivacaftor cannot be after date of death (error)
Stop date Lumacaftor/ivacaftor cannot be after date of death (error)
Stop date Tezacaftor/ivacaftor cannot be before start date (error)
Start date Tezacaftor/ivacaftor cannot be before date of birth (error)
Start date Tezacaftor/ivacaftor cannot be after date of death (error)
Stop date Tezacaftor/ivacaftor cannot be after date of death (error)
Stop date Elexacaftor/tezacaftor/ivacaftor cannot be before start date (error)
Start date Elexacaftor/tezacaftor/ivacaftor cannot be before date of birth (error)
Start date Elexacaftor/tezacaftor/ivacaftor cannot be after date of death (error)
Stop date Elexacaftor/tezacaftor/ivacaftor cannot be after date of death (error)
Stop date Blinded clinical trial cannot be before start date (error)
Start date Blinded clinical trial cannot be before date of birth (error)
Start date Blinded clinical trial cannot be after date of death (error)
Start date Blinded clinical trial cannot be after year of collection (error)
Stop date Blinded clinical trial cannot be after date of death (error)
Stop date Blinded clinical trial should be during the year of collection (error)
Stop date Other CFTR modulating therapy cannot be before start date (error)
Start date Other CFTR modulating therapy cannot be before date of birth (error)
Start date Other CFTR modulating therapy cannot be after date of death (error)
Stop date Other CFTR modulating therapy cannot be after date of death (error)
You indicated a switch to another CFTR modulator (reason stop Ivacaftor) but no other CFTR modulator molecule or blinded trial has been selected (error)
You indicated a switch to another CFTR modulator (reason stop Lumacaftor/Ivacaftor) but no other CFTR modulator molecule or blinded trial has been selected (error)
You indicated a switch to another CFTR modulator (reason stop Tezacaftor/Ivacaftor) but no other CFTR modulator molecule or blinded trial has been selected (error)
You indicated a switch to another CFTR modulator (reason stop Elexacaftor/Tezacaftor/Ivacaftor) but no other CFTR modulator molecule or blinded trial has been selected (error)

choice

Regular chest physiotherapy

Help

Indicate if the patient makes physiotherapy regularly either carried out by a physiotherapist or by the patient himself.

Technical specs

CSV column name:

regular_chest_physiotherapy

Only when:

Required:

true

Options

Label	Value
No	1
Yes	5
Missing Data	999

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Procedure

Data element:

ProcedureType

5.5 Immunosuppressive treatments (> 3 months)

fieldset

Calcineurin inhibitors

Fields

choice

Cyclosporine

Technical specs

CSV column name:

calcineurin_inhibitors|cyclosporine

Required:

true

Options

Label	Value
No	1
Yes	2
Missing Data	999

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.MedicationAgreement

Data element:

AgreedMedicine::Product

choice

Tacrolimus

Technical specs

CSV column name:

calcineurin_inhibitors|tacrolimus

Required:

true

Options

Label	Value
No	1
Yes	2
Missing Data	999

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.MedicationAgreement

Data element:

AgreedMedicine::Product

fieldset

Cell cycle inhibitors

Fields

choice

Azathioprine

Technical specs

CSV column name:

cell_cycle_inhibitors|azathioprine

Required:

true

Options

Label	Value
No	1
Yes	2
Missing Data	999

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.MedicationAgreement

Data element:

AgreedMedicine::Product

choice

Mycophenolate mofetil (MMF)

Technical specs

CSV column name:

cell_cycle_inhibitors|mycophenolate_mofetil_mmf

Required:

true

Options

Label	Value
No	1
Yes	2
Missing Data	999

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.MedicationAgreement

Data element:

AgreedMedicine::Product

fieldset

Other immunosuppressive treatments

Fields

choice

Steroids

Technical specs

CSV column name:

other_immunosuppressive_treatments|steroids

Required:

true

Options

Label	Value
No	1
Yes	2
Missing Data	999

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.MedicationAgreement

Data element:

AgreedMedicine::Product

choice

Everolimus

Technical specs

CSV column name:

other_immunosuppressive_treatments|everolimus

Required:

true

Options

Label	Value
No	1
Yes	2
Missing Data	999

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.MedicationAgreement

Data element:

AgreedMedicine::Product

choice

Other immunosuppressive therapy

Technical specs

CSV column name:

other_immunosuppressive_treatments|other_immunosuppressive_therapy

Required:

true

Options

Label	Value
No	1
Yes	2
Missing Data	999

Nested option fields

When 2 Is selected:
text
If yes, specify
Technical specs
CSV column name:
other_immunosuppressive_treatments|other_immunosuppressive_therapy|if_yes_specify
Length:
255
Required:
true
Mapping of the clinical building blocks (indicative only)
Concept:
be.en.hd.MedicationAgreement
Data element:
AgreedMedicine::Product

6 Transplantation

list

Transplants

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 year of the precise date of the most recent Tx must be equal to the year of the transplant date	(typeof $.precise_date_of_the_most_recent_tx === 'string' && $.year_of_transplant === 'number')?(new Date($.precise_date_of_the_most_recent_tx).getFullYear() = $.year_of_transplant):true
Precise date of Tx must be >= Precise date of first entering on the waiting list	(typeof $.precise_date_of_the_most_recent_tx === 'string' && typeof $.precise_date_of_first_entering_the_tx_waiting_list === 'string')?(new Date($.precise_date_of_the_most_recent_tx) >= new Date($.precise_date_of_first_entering_the_tx_waiting_list)):true
Year of transplant cannot be before the year of birth	typeof $.year_of_transplant === 'number' && typeof $$.document.target.value.patient_id.date_of_birth === 'string'?$.year_of_transplant >= new Date($$.document.target.value.patient_id.date_of_birth).getFullYear():true
Year of transplant cannot be after the year of death	typeof $.year_of_transplant === 'number' && typeof $$.document.target.value.patient_id.date_of_death=== 'string'?$.year_of_transplant
Precise date of first entering the Tx waiting list cannot be before the date of birth	typeof $.precise_date_of_first_entering_the_tx_waiting_list === 'string' && typeof $$.document.target.value.patient_id.date_of_birth === 'string'?new Date($.precise_date_of_first_entering_the_tx_waiting_list) >= new Date($$.document.target.value.patient_id.date_of_birth):true
Precise date of first entering the Tx waiting list cannot be after the year of data collection	typeof $.precise_date_of_first_entering_the_tx_waiting_list === 'string' && typeof $$.document.target.value.year_of_collection === 'number'?new Date($.precise_date_of_first_entering_the_tx_waiting_list).getFullYear()
Year of precise date of Tx must be equal to year of transplant	(typeof $.precise_date_of_the_most_recent_tx === 'string' && typeof $.year_of_transplant === 'number')?(new Date($.precise_date_of_the_most_recent_tx).getFullYear() === $.year_of_transplant):true
Year of transplant cannot be after the year of data collection	typeof $.year_of_transplant === 'number' && typeof $$.document.target.value.year_of_collection === 'number'?$.year_of_transplant
Precise date of first entering the Tx waiting list cannot be after the date of death	typeof $.precise_date_of_first_entering_the_tx_waiting_list === 'string' && typeof $$.document.target.value.patient_id.date_of_death === 'string'?new Date($.precise_date_of_first_entering_the_tx_waiting_list)
Year of Precise date of entering the Tx waiting list cannot be after the year of transplant	typeof $.precise_date_of_first_entering_the_tx_waiting_list === 'string' && typeof $.year_of_transplant === 'number'?new Date($.precise_date_of_first_entering_the_tx_waiting_list).getFullYear()
Precise date of the Tx cannot be before date of birth	typeof $.precise_date_of_the_most_recent_tx === 'string' && typeof $$.document.target.value.patient_id.date_of_birth === 'string'?new Date($.precise_date_of_the_most_recent_tx) >= new Date($$.document.target.value.patient_id.date_of_birth):true
Precise date of the Tx cannot be after date of death	typeof $.precise_date_of_the_most_recent_tx === 'string' && typeof $$.document.target.value.patient_id.date_of_death === 'string'?new Date($.precise_date_of_the_most_recent_tx)
Precise date of the Tx cannot be after the year of data collection	typeof $.precise_date_of_the_most_recent_tx === 'string' && typeof $$.document.target.value.year_of_collection === 'number'?new Date($.precise_date_of_the_most_recent_tx).getFullYear()

List items

text

Transplant status

Technical specs

CSV column name:

transplants|0|transplant_status

Length:

Reference list:

TRSP_STATUS

Required:

true

Stable:

true

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Procedure

Data element:

ProcedureType

text

Type of transplant

Technical specs

CSV column name:

transplants|0|type_of_transplant

Length:

Reference list:

TRSP_TYPE

Only when:

Required:

transplant_received

Stable:

true

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Procedure

Data element:

ProcedureAnatomicalLocation

number

Year of transplant

Technical specs

CSV column name:

transplants|0|year_of_transplant

Length:

Only when:

Required:

transplant_received

Stable:

true

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Procedure

Data element:

ProcedureStartDate

date

Precise date of entering the Tx waiting list

Technical specs

Format:

DD/MM/YYYY

CSV column name:

transplants|0|precise_date_of_first_entering_the_tx_waiting_list

Only when:

Required:

false

Stable:

true

date

Precise date of the Tx

Technical specs

Format:

DD/MM/YYYY

CSV column name:

transplants|0|precise_date_of_the_most_recent_tx

Only when:

Required:

false

Stable:

true

7 Social Data

7.1 Parenthood

choice

Parenthood this year

Help

Indicate whether the patient had a biological child in the year of registration.

Technical specs

CSV column name:

parenthood_this_year

Only when:

Required:

true

Options

Label	Value
No	1
Yes	2
Missing Data	999

Validation

There has been a pregnancy this year which resulted in a life birth, but parenthood this year is indicated as "No" (error)

choice

Pregnancy this year

Help

For pharmacovigilance purposes

Technical specs

CSV column name:

CD_PREGY_CURR_Y

Only when:

, ,

Required:

true

Options

Label	Value
No	1
Yes	2
Unknown	99

Validation

There has been a pregnancy this year which resulted in a life birth, but parenthood this year is indicated as "No" (error)

Nested option fields

When 2 Is selected:
choice
Pregnancy status
Technical specs
CSV column name:
CD_PREGY_CURR_Y|CD_PREGY_STA
Required:
false
Options
Label Value
Ongoing (on Dec 31th) 1
Life birth 2
Still birth 3
Therapeutic abortion 4
Spontaneous abortion 5
Unknown 99
choice
Congenital anomalies
Technical specs
CSV column name:
CD_PREGY_CURR_Y|CD_CON_AN
Required:
false
Options
Label Value
No 1
Yes 2
Unknown 99
Missing 999
Nested option fields
- When 2 Is selected:
  text
  Specify congenital anomalies
  Technical specs
  CSV column name:
  CD_PREGY_CURR_Y|CD_CON_AN|TX_CON_AN_SPECIF
  Required:
  false

list

Birth/adoption of the children for this patient

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
Child birth month must be a valid month number (from 1 to 12)	typeof $.child_birth_month === 'number'?$.child_birth_month >= 1 && $.child_birth_month
Child birth year must be a valid year (not before the date of birth of the parent)	typeof $.child_birth_year === 'number' && typeof $$.document.target.value.patient_id.date_of_birth === 'string'?$.child_birth_year >= new Date($$.document.target.value.patient_id.date_of_birth).getFullYear():true
Child birth year must be a valid year (not after the data collection year)	typeof $.child_birth_year === 'number' && typeof $$.document.target.value.year_of_collection === 'number'?$.child_birth_year
Child birth year must be a valid year (not after the date of death of the parent)	typeof $.child_birth_year === 'number' && typeof $$.document.target.value.patient_id.date_of_death === 'string'?$.child_birth_year

List items

number

Child birth month

Technical specs

CSV column name:

birthdays_of_the_biological_children_for_this_patient|0|child_birth_month

Length:

Required:

false

Stable:

true

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.FamilySituation

Data element:

..Geboortedatum

number

Child birth year

Technical specs

CSV column name:

birthdays_of_the_biological_children_for_this_patient|0|child_birth_year

Length:

Required:

false

Stable:

true

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.FamilySituation

Data element:

..Geboortedatum

7.2 School

choice

School status

Technical specs

CSV column name:

school_status

Only when:

Required:

true

Options

Label	Value
Unknown	0
Regular school/education attendance	1
Has finished school/education	4
No school	7
Missing Data	999

7.3 Employment data

choice

Patient works

Technical specs

CSV column name:

patient_works

Only when:

Required:

true

Options

Label	Value
No	1
Yes	2
Missing data	999

Nested option fields

When 2 Is selected:
choice
Percentage (work)
Technical specs
CSV column name:
patient_works|percentage_work
Required:
true
Options
Label Value
Unknown 0
Fulltime 1
Parttime 2
Missing Data 999

Label	Value
No	1
Yes	2
Missing Data	999

choice

Disability recognition requested

Technical specs

CSV column name:

CD_DISAB_RECOGN

Only when:

Required:

true

Options

Label	Value
No	1
Yes (child)	2
Yes (adult)	3
Unknown	99

number

Year of disability recognition request

Technical specs

CSV column name:

MS_DISAB_RECOGN_YR

Only when:

Required:

false

Stable:

true

choice

Parking card requested

Technical specs

CSV column name:

CD_PARK_REQ

Only when:

Required:

false

Stable:

true

Options

Label	Value
No	1
Yes	2

Nested option fields

When 2 Is selected:
choice
Parking card granted
Technical specs
CSV column name:
CD_PARK_REQ|CD_PARK_GRANT
Required:
false
Stable:
true
Options
Label Value
No 1
Yes 2
Unknown 99

choice

Decision made

Technical specs

CSV column name:

CD_DISAB_DECIS

Only when:

Required:

false

Stable:

true

Options

Label	Value
On paper	1
With consultation	2
Unknown	99

choice

Place of decision center

Technical specs

CSV column name:

CD_DISAB_DECIS_PLC

Only when:

Required:

false

Stable:

true

Options

Label	Value
Antwerp	1
Brussels Capital	2
East Flanders	3
Flemish Brabant	4
Hainaut	5
Liège	6
Limburg	7
Luxembourg	8
Namur	9
West Flanders	10
Walloon Brabant	11

number

Total number of points granted (child)

Technical specs

CSV column name:

MS_TOT_PNT

Only when:

Required:

false

Stable:

true

Validation

Total number of points granted (child) cannot be higher than 36 (error)

number

Pillar 1 (child)

Technical specs

CSV column name:

MS_PILAR1

Only when:

Required:

false

Stable:

true

Validation

Pillar 1 (child) must be between 0 and 6 (error)
Pillar 1 (child) must be between 0 and 6 (error)

number

Pillar 2 (child)

Technical specs

CSV column name:

MS_PILAR2

Only when:

Required:

false

Stable:

true

Validation

Pillar 2 (child) must be between 0 and 12 (error)
Pillar 2 (child) must be between 0 and 12 (error)

number

Pillar 3 (child)

Technical specs

CSV column name:

MS_PILAR3

Only when:

Required:

false

Stable:

true

Validation

Pillar 3 (child) must be between 0 and 9 (error)
Pillar 3 (child) must be between 0 and 9 (error)

choice

Part-time by any parent

Help

Official leave to take care of child or disabled / sick family member : Parental leave, Medical assistance leave or Credit-time with reason

Technical specs

CSV column name:

CD_PTM_PRNT

Only when:

Required:

false

Options

Label	Value
No	1
Yes	2
Unknown	99

choice

Working disability

Technical specs

CSV column name:

CD_WRK_DISAB

Only when:

Required:

false

Stable:

true

Options

Label	Value
No	1
Yes	2
Unknown	99

number

Independance - Points (adult)

Technical specs

CSV column name:

MS_INDEPNDC_PNT

Only when:

Required:

false

Stable:

true

Validation

Independance - Points (adult) must be between 0 and 18 (error)
Independance - Points (adult) must be between 0 and 18 (error)

number

Section 1 Movement (adult)

Technical specs

CSV column name:

MS_DISAB_SECTION1

Only when:

Required:

false

Stable:

true

Validation

Section 1 Movement (adult) must be between 0 and 3 (error)
Section 1 Movement (adult) must be between 0 and 3 (error)

number

Section 2 Cooking (adult)

Technical specs

CSV column name:

MS_DISAB_SECTION2

Only when:

Required:

false

Stable:

true

Validation

Section 2 Cooking (adult) must be between 0 and 3 (error)
Section 2 Cooking (adult) must be between 0 and 3 (error)

number

Section 3 Hygiene (adult)

Technical specs

CSV column name:

MS_DISAB_SECTION3

Only when:

Required:

false

Stable:

true

Validation

Section 3 Hygiene (adult) must be between 0 and 3 (error)
Section 3 Hygiene (adult) must be between 0 and 3 (error)

number

Section 4 Household (adult)

Technical specs

CSV column name:

MS_DISAB_SECTION4

Only when:

Required:

false

Stable:

true

Validation

Section 4 Household (adult) must be between 0 and 3 (error)
Section 4 Household (adult) must be between 0 and 3 (error)

number

Section 5 Reaction (adult)

Technical specs

CSV column name:

MS_DISAB_SECTION5

Only when:

Required:

false

Stable:

true

Validation

Section 5 Reaction (adult) must be between 0 and 3 (error)
Section 5 Reaction (adult) must be between 0 and 3 (error)

number

Section 6 Communication (adult)

Technical specs

CSV column name:

MS_DISAB_SECTION6

Only when:

Required:

false

Stable:

true

Validation

Section 6 Communication (adult) must be between 0 and 3 (error)
Section 6 Communication (adult) must be between 0 and 3 (error)

choice

Duration

Technical specs

CSV column name:

CD_DISAB_DURA

Only when:

Required:

false

Stable:

true

Options

Label	Value
Limited	1
Unlimited	2

7.5 Family composition

choice

Household composition

Technical specs

CSV column name:

household_composition

Required:

true

Stable:

true

Options

Label	Value
Unchanged	1
Changed	2
First Registering	3
Missing Data	999

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.FamilySituation

Data element:

Gezinssamenstelling

number

Number of siblings including the patient

Technical specs

CSV column name:

number_of_siblings_including_the_patient

Length:

Required:

false

Stable:

true

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.FamilyHistory

Data element:

BiologicalRelationship

Validation

Number of siblings with CF (excluding the patient) cannot be equal or greater than the number of siblings including the patient (error)
Number of siblings including patient must be between 0 and 20 ()
Number of siblings including patient must be between 0 and 20 (error)

number

Number of siblings with CF

Technical specs

CSV column name:

number_of_siblings_with_cf

Length:

Required:

false

Stable:

true

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.FamilyHistory

Data element:

Problem::Problem

Validation

Number of siblings with CF (excluding the patient) cannot be equal or greater than the number of siblings including the patient (error)
Number of siblings deceased from CF cannot be greater than the number of siblings with CF (error)
Number of siblings alive with CF must be between 0 and 19 ()
Number of siblings alive with CF must be between 0 and 19 (error)

number

Number of siblings deceased from CF

Technical specs

CSV column name:

number_of_siblings_deceased_from_cf

Length:

Required:

false

Stable:

true

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.FamilyHistory

Data element:

IsCauseOfDeath

Validation

Number of siblings deceased from CF cannot be greater than the number of siblings with CF (error)
Number of siblings deceased from CF must be between 0 and 19 ()
Number of siblings deceased from CF must be between 0 and 19 (error)

text

General remark

Technical specs

CSV column name:

general_remark

Length:

500

Only when:

Required:

false

Label	Value
No	1
Yes, short-acting only	3
Yes, long-acting only	4
Yes, short- and long-acting	5

Label	Value
Ongoing (on Dec 31th)	1
Life birth	2
Still birth	3
Therapeutic abortion	4
Spontaneous abortion	5
Unknown	99