Data Collection Definitions

Belgian Neuromuscular Disease Registry (BNMDR)

  • Start date: 10/04/2025
Full viewCSV column namesValidation rulesReference listsComputed expressionsAdditional informationCSV extract

1 Identification 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.

date

Date of last follow-up during the collection year

Help

Please make sure the year matches the current collection year, except for reporting a death. In that case, the date of death should be entered.

Technical specs

Format:

DD/MM/YYYY

CSV column name:

DT_LAST_FLLWUP

Required:

true

Validation
  • Date of last follow-up cannot be before date of birth (error)
  • Date of last follow-up cannot be in the future (error)
  • Date of last follow-up cannot be after date of death (error)
  • Stage of disease should not be equal to 'Symptomatic - not ambulant' for patients older than 3 (error)
  • 'Age at loss of ambulation' cannot be higher than the difference between the 'date of last follow-up' and 'date of birth' (error)
number

Year of data collection

Not to be included in the CSV.

Technical specs

CSV column name:

NR_YR_COLCN

Computed:

Required:

false

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:

be.en.hd.Patient

Data element:

PatientIdentificationNumber

Validation

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

Fields
Section help

Please encode a social security identification number (SSIN). Please note that the patient ID is always pseudonymised before being transferred to Healthdata.

text

Internal patient ID

Help

This field can be used to enter an internal ID or reference number. It is available for internal use only and is not transferred to 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

Required:

false

Stable:

true

boolean

Generated

Help

The patient_id|generated column can be set to 'TRUE' for an automatically generated patient_id.This column should only be added in case the patient_id is empty. If the column is set to 'TRUE', a patient_id is automatically generated based on the name, first name, date of birth and sex of the patient.

Technical specs

CSV column name:

patient_id|generated

Required:

false

Options
LabelValue
YesTRUE
NoFALSE
text

Name

Help

The name of the patient is never transferred to Healthdata and is available for your information only.

Technical specs

CSV column name:

patient_id|name

Length:

50

Required:

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

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:

50

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 last follow-up cannot be before date of birth (error)
  • Date of last LVEF cannot be before date of birth (error)
  • Date of first symptoms cannot be more than 9 months before date of birth (error)
  • Date of convention prolongation cannot be before date of birth (error)
  • Date of death cannot be before date of birth (error)
  • Date of last FS cannot be before the date of birth (error)
  • Date of ACTIVLIM test cannot be before date of birth (error)
  • Stage of disease should not be equal to 'Symptomatic - not ambulant' for patients older than 3 (error)
  • The date of birth needs to be after 1915 (error)
  • Date of birth cannot be in the future (error)
  • The end date of invasive ventilation cannot be before date of birth (error)
  • The start date of invasive ventilation cannot be before date of birth (error)
  • The start date of invasive ventilation cannot be before date of birth (error)
  • The end date of non-invasive ventilation cannot be before date of birth (error)
  • The start date of non-invasive ventilation cannot be before date of birth (error)
  • The start date of non-invasive ventilation cannot be before date of birth (error)
  • Date of FVC test cannot be before date of birth (error)
  • Date of first surgery cannot be before date of birth (error)
  • Start date current steroids therapy cannot be before the date of birth (error)
  • Date of muscle biopsy cannot be before the date of birth (error)
  • The start date previously steroids therapy cannot be before date of birth (error)
  • The stop date previously steroids therapy cannot be before date of birth (error)
  • Date began of permanent wheelchair use cannot be before date of birth (error)
  • Date began of intermittent wheelchair use cannot be before date of birth (error)
  • Date of final diagnosis cannot be more than 9 months before date of birth (error)
  • Date of genetic diagnosis cannot be more than 9 months before date of birth (error)
  • 'Age at loss of ambulation' cannot be higher than the difference between the 'date of last follow-up' and 'date of birth' (error)
choice

Sex

Technical specs

CSV column name:

patient_id|sex

Required:

true

Stable:

true

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

Concept:

be.en.hd.Patient

Data element:

Gender

text

Place of residence

Help

Please select 9999 for patients not living in Belgium

Technical specs

CSV column name:

patient_id|place_of_residence

Length:

5

Reference list:

POSTAL_CODE

Required:

true

Stable:

true

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Patient

Data element:

Postcode

boolean

Deceased?

Technical specs

CSV column name:

patient_id|deceased

Only when:

Required:

true

Stable:

true

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Patient

Data element:

DeathIndicator

Options
LabelValue
YesTRUE
NoFALSE
date

Date of death

Technical specs

Format:

DD/MM/YYYY

CSV column name:

patient_id|date_of_death

Only when:

Required:

false

Stable:

true

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Patient

Data element:

DateOfDeath

choice

Is the patient alive?

Technical specs

CSV column name:

CD_PAT_ALV

Required:

true

Stable:

true

Options
LabelValue
Yes438949009
No0
Loss of follow-up2
date

Date of death

Technical specs

Format:

DD/MM/YYYY

CSV column name:

DT_DEATH

Only when:

Required:

false

Stable:

true

Validation
  • Date of death cannot be before date of birth (error)
  • Date of convention prolongation cannot be after date of death (error)
  • Date of first symptoms cannot be after date of death (error)
  • Date of final diagnosis cannot be after date of death (error)
  • Date of genetic diagnosis cannot be after date of death (error)
  • Date of death cannot be in the future (error)
  • Date of ACTIVLIM test cannot be after date of death (error)
  • Date of last follow-up cannot be after date of death (error)
  • Date of last LVEF cannot be after date of death (error)
  • Date of last FS cannot be after date of death (error)
  • The start date of non-invasive ventilation cannot be after date of death (error)
  • The end date of non-invasive ventilation cannot be after date of death (error)
  • The start date of non-invasive ventilation cannot be after date of death (error)
  • The start date of invasive ventilation cannot be after date of death (error)
  • The end date of invasive ventilation cannot be after date of death (error)
  • The start date of invasive ventilation cannot be after date of death (error)
  • Date of FVC test cannot be after date of death (error)
  • Date of first surgery cannot be after date of death (error)
  • Start date current steroids therapy cannot be after date of death (error)
  • Date of muscle biopsy cannot be after date of death (error)
  • Start date previously steroids therapy cannot be after date of death (error)
  • Stop date previously steroids therapy cannot be after date of death (error)
  • Date began of permanent wheelchair use cannot be after date of death (error)
  • Date began of intermittent wheelchair use cannot be after date of death (error)
text

Cause of death

Help

This is the final condition that led to the death of the patient. Use "Z78.9 - Other specified health status" if you can not find a correct ICD-10 code and specify in the free text field. In case of euthanasia, use "Z78.9 - Other specified health status" and specify "euthanasia" in the free text field. In case of unknown cause of death, use “ZZZZ – Unknown".

Technical specs

CSV column name:

CD_COD

Reference list:

ICD10CM_2019

Only when:

Required:

false

Stable:

true

text

Please specify

Technical specs

CSV column name:

TX_COD_OTH

Only when:

Required:

false

Stable:

true

2 Physician

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

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).

text

RIZIV/INAMI-code of the treating physician

Technical specs

CSV column name:

treating_physician|CD_RIZIV_TREAT_PHYS

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

3 Medical data

3.1 Diagnosis

3.1.1 Convention

choice

Is the patient 'in convention'?

Technical specs

CSV column name:

CD_IN_CONVT

Required:

true

Options
LabelValue
Yes1
In the process (patient has been seen in your center this year, once or twice, but the paperwork needed for the NIHDI is not complete)3
No0
Validation
  • Date of convention prolongation cannot be before date of birth (error)
  • Date of convention prolongation cannot be after date of death (error)
  • When did the convention prolongation begin? cannot be in the future (error)
Nested option fields
  • When 1 Is selected:
    date

    When did the convention prolongation begin?

    Technical specs

    Format:

    DD/MM/YYYY

    CSV column name:

    CD_IN_CONVT|DT_IN_CONVT

    Required:

    false

3.1.2 Classification

text

NIHDI classification

Technical specs

CSV column name:

CD_NIHDI

Length:

250

Reference list:

NIHDI

Required:

true

Stable:

true

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Problem

Data element:

ProblemName

Validation
  • DMD? = yes should correspond to NIHDI classification = '2 - Duchenne Muscular Dystrophy' or '3 - Becker Muscular Dystrophy' or '4 - Dystrophinopathy' (error)
  • DMD? = no should correspond to NIHDI classification different from '2 - Duchenne Muscular Dystrophy' or '3 - Becker Muscular Dystrophy' or '4 - Dystrophinopathy' (error)
  • Diagnosis DMD=DMD should correspond to NIHDI classification '2 - Duchenne Muscular Dystrophy' (error)
  • Diagnosis DMD=BMD should correspond to NIHDI classification '3 - Becker Muscular Dystrophy' (error)
  • This patient should be entered in the BNMDR-SMA registry and not in BNMDR. (warning)
text

CRAMP classification

Technical specs

CSV column name:

CD_CRAMP

Length:

250

Reference list:

BNMDR

Required:

true

Stable:

true

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Problem

Data element:

ProblemName

Validation
  • DMD? = yes should correspond to CRAMP classification = '6.1.1.1.1.0.0.0 - Duchenne (severe), X-linked, DMD gene, dystrophin' or '6.1.1.1.2.0.0.0 - Becker (mild), DMD gene, dystrophin' or '6.1.1.1.3.0.0.0 - Manifesting Duchenne carrier' or '6.1.1.1.4.0.0.0 - Non-manifesting Duchenne carrier' (error)
  • DMD? = no should correspond to CRAMP classification different from '6.1.1.1.1.0.0.0 - Duchenne (severe), X-linked, DMD gene, dystrophin' or '6.1.1.1.2.0.0.0 - Becker (mild), DMD gene, dystrophin' or '6.1.1.1.3.0.0.0 - Manifesting Duchenne carrier' or '6.1.1.1.4.0.0.0 - Non-manifesting Duchenne carrier' (error)
  • Diagnosis DMD=DMD should correspond to CRAMP classification '6.1.1.1.1.0.0.0 - Duchenne (severe), X-linked, DMD gene, dystrophin' (error)
  • Diagnosis DMD=BMD should correspond to CRAMP classification '6.1.1.1.2.0.0.0 - Becker (mild), DMD gene, dystrophin' (error)
  • Diagnosis DMD= female carrier should correspond to CRAMP classification '6.1.1.1.3.0.0.0 - Manifesting Duchenne carrier' or '6.1.1.1.4.0.0.0 - Non-manifesting Duchenne carrier' (error)
text

OrphaNet classification

Help

If needed, please select the appropriate Orpha number

Technical specs

CSV column name:

CD_ORPH

Length:

250

Reference list:

ORPHA

Required:

false

Stable:

true

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Problem

Data element:

ProblemName

text

ICD-10 classification

Technical specs

CSV column name:

CD_ICD10

Length:

250

Reference list:

ICD10

Required:

false

Stable:

true

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Problem

Data element:

ProblemName

text

OMIM gene classification

Technical specs

CSV column name:

CD_OMIM_GENET

Length:

250

Reference list:

OMIM

Required:

false

Stable:

true

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.TransferLaboratoryResult

Data element:

Result

text

Additional information

Help

Please complete here only if the above classifications did not allow you to accurately describe your patient's disease

Technical specs

CSV column name:

TX_ADD_INFO_CLASS

Required:

false

Stable:

true

3.1.3 Dates

choice

Age of symptom onset

Help

Period in which the first symptoms manifested, as reported by the individual or their family. Any symptoms which were not considered abnormal at the time, but can retrospectively be attributed to the disease, should be considered as well.

Technical specs

CSV column name:

CD_AGE_SYMP_ONST

Required:

true

Stable:

true

Options
LabelValue
Prenatal1
Other2
Unknown99
date

Date of first symptoms

Technical specs

Format:

DD/MM/YYYY

CSV column name:

DT_FIRST_SYMP

Only when:

Required:

true

Stable:

true

Mapping of the clinical building blocks (indicative only)

Concept:

Be.en.hd.TransferConcern

Data element:

ProblemStartDate

Validation
  • Date of first symptoms cannot be more than 9 months before date of birth (error)
  • Date of first symptoms cannot be after date of death (error)
  • Date of first symptoms cannot be in the future (error)
number

Age at first symptoms

Not to be included in the CSV.

Technical specs

CSV column name:

MS_AGE_FIRST_SYMP

Length:

10

Computed:

Only when:

Required:

false

Stable:

true

Read only

choice

Final diagnosis

Technical specs

CSV column name:

CD_FINL_DIAGS

Required:

true

Stable:

true

Options
LabelValue
Yes1
No0
date

Date of final diagnosis

Help

For a genetic disease, please enter the date indicated on the genetic report. For a non-genetic disease, please enter the date of the consultation at which the physician had the full clinical picture and communicated it to the patient.

Technical specs

Format:

DD/MM/YYYY

CSV column name:

DT_FINL_DIAGS

Only when:

Required:

false

Stable:

true

Mapping of the clinical building blocks (indicative only)

Concept:

Be.en.hd.Problem

Data element:

ProblemStatusDate

Validation
  • Date of final diagnosis cannot be after date of death (error)
  • Date of final diagnosis cannot be in the future (error)
  • Date of final diagnosis cannot be more than 9 months before date of birth (error)
number

Age at diagnosis

Not to be included in the CSV.

Technical specs

CSV column name:

MS_AGE_DIAGS

Length:

10

Computed:

Only when:

Required:

false

Stable:

true

Read only

number

Age difference between first symptoms and diagnosis

Not to be included in the CSV.

Technical specs

CSV column name:

MS_AGE_DIF_FIRST_SYMP_DIAGS

Length:

10

Computed:

Only when:

Required:

false

Stable:

true

Read only

choice

Has the patient had genetic confirmation?

Technical specs

CSV column name:

CD_DIAGS_CONFRM_GENET_TEST

Required:

true

Stable:

true

Options
LabelValue
Yes1
Yes, but the report is unavailable2
No0
Not applicable for this disease3
Unknown99
date

Date of genetic diagnosis

Technical specs

Format:

DD/MM/YYYY

CSV column name:

DT_GENET_DIAGS

Only when:

Required:

true

Stable:

true

Validation
  • Date of genetic diagnosis cannot be after date of death (error)
  • Date of genetic diagnosis cannot be in the future (error)
  • Date of genetic diagnosis cannot be more than 9 months before date of birth (error)
choice

Stage of disease

Technical specs

CSV column name:

CD_STG_DSEAS

Required:

true

Stable:

true

Options
LabelValue
Pre-symptomatic1
Symptomatic - not ambulant (only for patients 5
Ambulant2
Loss of ambulation/wheel chair3
Night-time ventilation6
More than night-time ventilation7
Validation
  • Stage of disease should not be equal to 'Symptomatic - not ambulant' for patients older than 3 (error)
  • 'Currently able to walk = yes' cannot be combined with 'stage of disease=Symptomatic - not ambulant (only for patients < 2.5 years)' or 'stage of disease= loss of ambulation/wheel chair' or 'stage of disease=night time ventilation' or 'stage of disease = more than night-time ventilation' (error)
  • 'Currently able to walk = no' cannot be combined with 'stage of disease=Pre-symptomatic' or 'stage of disease= ambulant' (error)

3.2 ACTIVLIM

Section help

This section is not applicable for patients younger than 6 years and patients older than 80 years

choice

Did the patient fill out the ACTIVLIM questionnaire?

Technical specs

CSV column name:

CD_PAT_AL_QUES

Only when:

,

Required:

true

Options
LabelValue
Yes1
No0
date

ACTIVLIM date

Technical specs

Format:

DD/MM/YYYY

CSV column name:

DT_AL

Only when:

, ,

Required:

true

Validation
  • Date of ACTIVLIM test cannot be in the future (error)
  • Date of ACTIVLIM test cannot be before date of birth (error)
  • Date of ACTIVLIM test cannot be after date of death (error)
choice

Everything easy or everything impossible

Help

To make the ACTIVLIM questions appear, please indicate not applicable.

Technical specs

CSV column name:

CD_EVER_IMPOS

Only when:

Required:

true

Options
LabelValue
Everything easy1
Everything impossible2
Not applicable3
questionnaire

Indicate the difficulty perceived for each of the following activities

Technical specs

Only when:

, ,

Required:

false

Questions
LabelCSV column name
Putting on a T-shirtCD_AL_PUT_TSHRT
Washing one's upper bodyCD_AL_WSH_UPPR_BOD
Dressing one's lower bodyCD_AL_DRES_LOW_BOD
Taking a showerCD_AL_TAK_SHOWR
Sitting on the toiletCD_AL_SIT_TOIL
Taking a bathCD_AL_TAK_BAT
Walking downstairsCD_AL_WALK_DWNSTR
Stepping out of a bath tubCD_AL_STP_BAT
Opening a doorCD_AL_OPN_DOOR
Walking outdoors on level groundCD_AL_WALK_OUTDR_GRND_LEVEL
Washing one's faceCD_AL_WSH_FACE
Hanging up a jacket on a hatstandCD_AL_HAN_JACK_HATSTN
Wiping one's upper bodyCD_AL_WIP_UPPR_BOD
Going up the stairsCD_AL_GO_STAI
Carrying a heavy loadCD_AL_CARY_HVY_LOAD
Getting into a carCD_AL_GET_CAR
Standing for a long time (± 10 min)CD_AL_STAN_LON_TM_10_MIN
Walking more than one kilometerCD_AL_WALK_MOR_1_KM
Closing a doorCD_AL_CLOS_DOOR
Hopping on one footCD_AL_HOP_1_FOOT
Putting on a backpackCD_AL_PUT_BCKPCK
RunningCD_AL_RUN
Answers
LabelValue
Impossible1
Difficult2
Easy3
No answer4

3.3 Treat-NMD

Section help

Data should have been curated.

3.3.1 Diagnosis

choice

Does the patient suffer from DMD?

Technical specs

CSV column name:

CD_DMD

Required:

true

Stable:

true

Options
LabelValue
Yes1
No0
Validation
  • DMD? = yes should correspond to NIHDI classification = '2 - Duchenne Muscular Dystrophy' or '3 - Becker Muscular Dystrophy' or '4 - Dystrophinopathy' (error)
  • DMD? = no should correspond to NIHDI classification different from '2 - Duchenne Muscular Dystrophy' or '3 - Becker Muscular Dystrophy' or '4 - Dystrophinopathy' (error)
  • DMD? = yes should correspond to CRAMP classification = '6.1.1.1.1.0.0.0 - Duchenne (severe), X-linked, DMD gene, dystrophin' or '6.1.1.1.2.0.0.0 - Becker (mild), DMD gene, dystrophin' or '6.1.1.1.3.0.0.0 - Manifesting Duchenne carrier' or '6.1.1.1.4.0.0.0 - Non-manifesting Duchenne carrier' (error)
  • DMD? = no should correspond to CRAMP classification different from '6.1.1.1.1.0.0.0 - Duchenne (severe), X-linked, DMD gene, dystrophin' or '6.1.1.1.2.0.0.0 - Becker (mild), DMD gene, dystrophin' or '6.1.1.1.3.0.0.0 - Manifesting Duchenne carrier' or '6.1.1.1.4.0.0.0 - Non-manifesting Duchenne carrier' (error)
choice

Diagnosis DMD

Technical specs

CSV column name:

CD_DIAGS_DMD

Only when:

Required:

true

Stable:

true

Options
LabelValue
DMD1
BMD2
IMD3
Female Carrier4
Unknown99
Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Problem

Data element:

ProblemName

Validation
  • Diagnosis DMD=DMD should correspond to NIHDI classification '2 - Duchenne Muscular Dystrophy' (error)
  • Diagnosis DMD=DMD should correspond to CRAMP classification '6.1.1.1.1.0.0.0 - Duchenne (severe), X-linked, DMD gene, dystrophin' (error)
  • Diagnosis DMD=BMD should correspond to NIHDI classification '3 - Becker Muscular Dystrophy' (error)
  • Diagnosis DMD=BMD should correspond to CRAMP classification '6.1.1.1.2.0.0.0 - Becker (mild), DMD gene, dystrophin' (error)
  • Diagnosis DMD= female carrier should correspond to CRAMP classification '6.1.1.1.3.0.0.0 - Manifesting Duchenne carrier' or '6.1.1.1.4.0.0.0 - Non-manifesting Duchenne carrier' (error)

3.3.2 Molecular Data

choice

Has the patient's mutation(s) been characterized molecularly?

Technical specs

CSV column name:

CD_MUTAT_PAT

Only when:

Required:

true

Stable:

true

Options
LabelValue
Yes1
Yes but the mutation was not identified2
In progress3
No0
Unknown99
text

Mutation name in gene (HGVS rules)

Technical specs

CSV column name:

TX_MUTAT

Length:

250

Only when:

Required:

true

Stable:

true

Validation
  • Length of mutation name cannot be longer than 80 characters (error)
choice

Deletion: all exons tested

Technical specs

CSV column name:

CD_DELTN_EXON_TEST

Only when:

Required:

true

Stable:

true

Options
LabelValue
Yes1
No0
Unknown99
choice

Duplication: all exons tested

Technical specs

CSV column name:

CD_DUPLIN_ALL_EXON_TEST

Only when:

Required:

true

Stable:

true

Options
LabelValue
Yes1
No0
Unknown99
choice

Deletion/duplication: boundaries known

Technical specs

CSV column name:

CD_DELTN_DUPLIN_KNOW_BNDRY

Only when:

Required:

true

Stable:

true

Options
LabelValue
Yes1
No0
Unknown99
choice

Point mutation: all exons sequenced

Technical specs

CSV column name:

CD_PNT_MUTAT_ALL_EXON_SEQ

Only when:

Required:

true

Stable:

true

Options
LabelValue
Yes1
No0
Unknown99
choice

Targeted mutation testing in this patient but testing of all exons in an affected male relative (index patient)

Technical specs

CSV column name:

CD_TRGT_MUTAT_TEST_EXON_PAT

Only when:

Required:

true

Stable:

true

Options
LabelValue
Yes1
No0
Unknown99

3.3.3 Motor Function

choice

Currently able to walk

Technical specs

CSV column name:

CD_CURLY_ABLE_WALK

Only when:

Required:

true

Stable:

true

Options
LabelValue
Yes1
No0
Mapping of the clinical building blocks (indicative only)

Concept:

be.nl.hd.Mobility

Data element:

Validation
  • 'Currently able to walk = yes' cannot be combined with 'stage of disease=Symptomatic - not ambulant (only for patients < 2.5 years)' or 'stage of disease= loss of ambulation/wheel chair' or 'stage of disease=night time ventilation' or 'stage of disease = more than night-time ventilation' (error)
  • 'Currently able to walk = no' cannot be combined with 'stage of disease=Pre-symptomatic' or 'stage of disease= ambulant' (error)
choice

Age at loss of ambulation

Technical specs

CSV column name:

CD_AGE_START_WHLCHR_USE

Only when:

Required:

true

Stable:

true

Options
LabelValue
Known1
Unknown99
number

Specify the age at loss of ambulation

Help

In case the patient has never walked, please fill in “0”

Technical specs

CSV column name:

MS_AGE_START_WHLCHR_USE

Length:

10

Only when:

Required:

true

Stable:

true

Mapping of the clinical building blocks (indicative only)

Concept:

be.nl.hd.Mobility

Data element:

Validation
  • Age at loss of ambulation cannot contain more than 2 digits (error)
  • 'Age at loss of ambulation' cannot be higher than the difference between the 'date of last follow-up' and 'date of birth' (error)
choice

Does the patient use wheelchair?

Help

For patients ≥ 2 years old

Technical specs

CSV column name:

CD_WHLCHR_USE

Only when:

,

Required:

true

Stable:

true

Options
LabelValue
Permanent1
Intermittent2
Never3
Unknown99
Mapping of the clinical building blocks (indicative only)

Concept:

be.nl.hd.Mobility

Data element:

Validation
  • Date began of permanent wheelchair use cannot be before date of birth (error)
  • Date began of permanent wheelchair use cannot be after date of death (error)
  • Date began of permanent wheelchair use cannot be in the future (error)
  • Date began of intermittent wheelchair use cannot be before date of birth (error)
  • Date began of intermittent wheelchair use cannot be after date of death (error)
  • Date began of intermittent wheelchair use cannot be in the future (error)
Nested option fields
  • When 1 Is selected:
    date

    Date began

    Technical specs

    Format:

    DD/MM/YYYY

    CSV column name:

    CD_WHLCHR_USE|DT_WHLCHR_START_PMT

    Required:

    false

    Stable:

    true

  • When 2 Is selected:
    date

    Date began

    Technical specs

    Format:

    DD/MM/YYYY

    CSV column name:

    CD_WHLCHR_USE|DT_WHLCHR_START_INTMT

    Required:

    false

    Stable:

    true

choice

Sitting without support

Technical specs

CSV column name:

CD_SIT_WO_SUPP

Only when:

Required:

true

Options
LabelValue
Never able1
Gained2
Gained and lost3
Mapping of the clinical building blocks (indicative only)

Concept:

be.nl.hd.Mobility

Data element:

3.3.4 Steroids

choice

Current steroid therapy

Technical specs

CSV column name:

CD_STERD_THERPY

Only when:

Required:

true

Stable:

true

Options
LabelValue
Currently1
Previously2
Never3
Unknown99
Mapping of the clinical building blocks (indicative only)

Concept:

Be.en.hd.MedicationPrescription

Data element:

ProductName

Validation
  • Start date current steroids therapy cannot be in the future (error)
  • Start date current steroids therapy cannot be after date of death (error)
  • Start date current steroids therapy cannot be before the date of birth (error)
  • The start date previously steroids therapy cannot be before date of birth (error)
  • Start date previously steroids therapy cannot be after date of death (error)
  • Start date previously steroids therapy cannot be in the future (error)
  • The stop date previously steroids therapy cannot be before date of birth (error)
  • Stop date previously steroids therapy cannot be after date of death (error)
  • Stop date previously steroids therapy cannot be in the future (error)
  • The start date previously steroids therapy cannot be after the stop date previously steroids therapy (error)
Nested option fields
  • When 1 Is selected:
    date

    Start date

    Technical specs

    Format:

    DD/MM/YYYY

    CSV column name:

    CD_STERD_THERPY|DT_STERD_THERPY_CURR_START

    Required:

    false

    Stable:

    true

  • When 2 Is selected:
    date

    Start date

    Technical specs

    Format:

    DD/MM/YYYY

    CSV column name:

    CD_STERD_THERPY|DT_STERD_THERPY_PREVLY_START

    Required:

    false

    Stable:

    true

    date

    Stop date

    Technical specs

    Format:

    DD/MM/YYYY

    CSV column name:

    CD_STERD_THERPY|DT_STERD_THERPY_PREVLY_END

    Required:

    false

    Stable:

    true

3.3.5 Scoliosis

choice

Has the patient been diagnosed with scoliosis?

Technical specs

CSV column name:

CD_DIAGS_SCOL

Only when:

Required:

true

Stable:

true

Options
LabelValue
Yes1
No0
Unknown99
number

Cobb angle according to radiology results (degrees)

Technical specs

CSV column name:

MS_COBB_ANGLE

Only when:

Required:

false

Stable:

true

choice

Has the patient had surgery for the scoliosis?

Technical specs

CSV column name:

CD_SCOL_SURG

Only when:

Required:

true

Stable:

true

Options
LabelValue
Yes1
No0
Unknown99
Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Procedure

Data element:

ProcedureType

choice

Surgery technique

Technical specs

CSV column name:

CD_SURG_TECHNQ

Only when:

Required:

true

Stable:

true

Options
LabelValue
Spinal arthrodesis55705006
Growing rods2
Other3
Unknown99
text

Please specify the other surgery technique

Technical specs

CSV column name:

TX_OTH_SURG_TECHNQ

Only when:

Required:

true

Stable:

true

date

Date of first surgery

Technical specs

Format:

DD/MM/YYYY

CSV column name:

DT_FIRST_SURG

Only when:

Required:

false

Stable:

true

Validation
  • Date of first surgery cannot be in the future (error)
  • Date of first surgery cannot be after date of death (error)
  • Date of first surgery cannot be before date of birth (error)

3.3.6 Heart

choice

Current cardiac medication

Technical specs

CSV column name:

CD_CURR_CARDIAC_MEDICT

Only when:

Required:

true

Stable:

true

Options
LabelValue
Yes1
No0
Unknown99
Mapping of the clinical building blocks (indicative only)

Concept:

Be.en.hd.MedicationPrescription

Data element:

ProductName

Validation
  • Please complete the 'Cardiac medication' information (error)
text

Hidden filter field

Not to be included in the CSV.

Technical specs

CSV column name:

CD_HID

Reference list:

FILTER

Default value:

FILT4

Only when:

Required:

false

Read only

list

If yes, please list medication

This is a container for multiple answers. See the reference documentation for more details. Below you can find the information about the fields of the container

Element conditions
MessageExpression
List items
text

Cardiac medication

Technical specs

CSV column name:

if_yes_please_list_medication|0|CD_CARDIAC_MEDICT

Reference list:

MedicinalProductSCT

Required:

true

text

If other, please specify

Technical specs

CSV column name:

if_yes_please_list_medication|0|TX_CARDIAC_MEDICT_OTH

Only when:

Required:

true

Stable:

true

choice

Heart failure/cardiomyopathy

Technical specs

CSV column name:

CD_HEART_FAIL_CARDIOM

Only when:

Required:

true

Stable:

true

Options
LabelValue
Yes1
No0
Unknown99
Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Problem

Data element:

ProblemName

choice

Was the patient's LVEF measured?

Technical specs

CSV column name:

CD_LVEF

Only when:

Required:

true

Options
LabelValue
Yes250908004
No0
Unknown99
number

Last LVEF

Technical specs

CSV column name:

MS_LAST_LVEF

Length:

10

Only when:

,

Required:

true

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.TransferTextResult

Data element:

TextResult

Validation
  • Last LVEF cannot be less than 1 (error)
  • Last LVEF cannot be more than 100 (error)
date

Date of last LVEF

Technical specs

Format:

DD/MM/YYYY

CSV column name:

DT_LAST_LVEF

Only when:

,

Required:

true

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.TransferTextResult

Data element:

TextResultDateTime

Validation
  • Date of last LVEF cannot be before date of birth (error)
  • Date of last LVEF cannot be in the future (error)
  • Date of last LVEF cannot be after date of death (error)
choice

Was LVEF measured by scintigraphy?

Technical specs

CSV column name:

CD_LVEF_SCI

Only when:

Required:

false

Options
LabelValue
Yes1
No0
Unknown99
choice

Was the patient's Fractional Shortening (FS) measured?

Technical specs

CSV column name:

CD_FS

Only when:

Required:

true

Options
LabelValue
Yes1
No0
Unknown99
number

Last Fractional Shortening (FS)

Technical specs

CSV column name:

MS_LAST_FS

Length:

10

Only when:

,

Required:

true

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.TransferTextResult

Data element:

TextResult

Validation
  • Last fractional shortening (FS) cannot be less than 1 (error)
  • Last fractional shortening (FS) cannot be more than 150 (error)
date

Date of last FS

Technical specs

Format:

DD/MM/YYYY

CSV column name:

DT_LAST_FS

Only when:

,

Required:

true

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.TransferTextResult

Data element:

TextResultDateTime

Validation
  • Date of last FS cannot be in the future (error)
  • Date of last FS cannot be before the date of birth (error)
  • Date of last FS cannot be after date of death (error)
choice

Was the FS measured by Scintigraphy?

Technical specs

CSV column name:

CD_FS_SCI

Only when:

Required:

false

Options
LabelValue
Yes1
No0
Unknown99

3.3.7 Pulmonary Function

choice

Has the patient ever used non-invasive ventilation?

Technical specs

CSV column name:

CD_NONINV_VENTIL

Only when:

Required:

true

Stable:

true

Options
LabelValue
Never1
Previously2
Currently3
Unknown99
Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Respiration

Data element:

AdministeredOxygen::AdministrationDevice::MedicalDevice:ProductType

Validation
  • The start date of non-invasive ventilation cannot be after the end date of non-invasive ventilation (error)
  • The end date of non-invasive ventilation cannot be before date of birth (error)
  • The start date of non-invasive ventilation cannot be before date of birth (error)
  • The start date of non-invasive ventilation cannot be before date of birth (error)
  • The start date of non-invasive ventilation cannot be in the future (error)
  • The end date of non-invasive ventilation cannot be in the future (error)
  • The start date of non-invasive ventilation cannot be in the future (error)
  • The start date of non-invasive ventilation cannot be after date of death (error)
  • The end date of non-invasive ventilation cannot be after date of death (error)
  • The start date of non-invasive ventilation cannot be after date of death (error)
  • 'Currently for invasive ventilation' cannot be combined with 'currently for non-invasive ventilation' (error)
Nested option fields
  • When 2 Is selected:
    date

    Start date

    Technical specs

    Format:

    DD/MM/YYYY

    CSV column name:

    CD_NONINV_VENTIL|DT_NONINV_VENTIL_PREVLY_START

    Required:

    false

    Stable:

    true

    Mapping of the clinical building blocks (indicative only)

    Concept:

    be.en.hd.Respiration

    Data element:

    AdministeredOxygen::AdministrationDevice::MedicalDevice:StartDate

    date

    End date

    Technical specs

    Format:

    DD/MM/YYYY

    CSV column name:

    CD_NONINV_VENTIL|DT_NONINV_VENTIL_PREVLY_END

    Required:

    false

    Stable:

    true

    Mapping of the clinical building blocks (indicative only)

    Concept:

    be.en.hd.Respiration

    Data element:

    AdministeredOxygen::AdministrationDevice::MedicalDevice:EndDate

  • When 3 Is selected:
    date

    Start date

    Technical specs

    Format:

    DD/MM/YYYY

    CSV column name:

    CD_NONINV_VENTIL|DT_NONINV_VENTIL_CURLY_START

    Required:

    false

    Stable:

    true

    Mapping of the clinical building blocks (indicative only)

    Concept:

    be.en.hd.Respiration

    Data element:

    AdministeredOxygen::AdministrationDevice::MedicalDevice:StartDate

choice

Frequency of non-invasive ventilation

Technical specs

CSV column name:

CD_FREQ_NONINV_VENTIL

Only when:

Required:

true

Options
LabelValue
Full-time1
Part-time2
Unknown99
choice

Specify the number of hours per day of non-invasive ventilation

Technical specs

CSV column name:

CD_H_NONINV_VENTIL

Only when:

Required:

true

Options
LabelValue
More than 16h/24h1
Less than 16h/24h2
choice

Has the patient ever used invasive ventilation?

Technical specs

CSV column name:

CD_INV_VENTIL

Only when:

Required:

true

Stable:

true

Options
LabelValue
Never1
Previously2
Currently3
Unknown99
Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Respiration

Data element:

AdministeredOxygen::AdministrationDevice::MedicalDevice:ProductType

Validation
  • The start date of invasive ventilation cannot be after the end date of invasive ventilation (error)
  • The end date of invasive ventilation cannot be before date of birth (error)
  • The start date of invasive ventilation cannot be before date of birth (error)
  • The start date of invasive ventilation cannot be before date of birth (error)
  • The start date of invasive ventilation cannot be in the future (error)
  • The end date of invasive ventilation cannot be in the future (error)
  • The start date of invasive ventilation cannot be in the future (error)
  • The start date of invasive ventilation cannot be after date of death (error)
  • The end date of invasive ventilation cannot be after date of death (error)
  • The start date of invasive ventilation cannot be after date of death (error)
  • 'Currently for invasive ventilation' cannot be combined with 'currently for non-invasive ventilation' (error)
Nested option fields
  • When 2 Is selected:
    date

    Start date

    Technical specs

    Format:

    DD/MM/YYYY

    CSV column name:

    CD_INV_VENTIL|DT_INV_VENTIL_PREVLY_START

    Required:

    false

    Stable:

    true

    Mapping of the clinical building blocks (indicative only)

    Concept:

    be.en.hd.Respiration

    Data element:

    AdministeredOxygen::AdministrationDevice::MedicalDevice:StartDate

    date

    End date

    Technical specs

    Format:

    DD/MM/YYYY

    CSV column name:

    CD_INV_VENTIL|DT_INV_VENTIL_PREVLY_END

    Required:

    false

    Stable:

    true

    Mapping of the clinical building blocks (indicative only)

    Concept:

    be.en.hd.Respiration

    Data element:

    AdministeredOxygen::AdministrationDevice::MedicalDevice:EndDate

  • When 3 Is selected:
    date

    Start date

    Technical specs

    Format:

    DD/MM/YYYY

    CSV column name:

    CD_INV_VENTIL|DT_INV_VENTIL_CURLY_START

    Required:

    false

    Stable:

    true

    Mapping of the clinical building blocks (indicative only)

    Concept:

    be.en.hd.Respiration

    Data element:

    AdministeredOxygen::AdministrationDevice::MedicalDevice:StartDate

choice

Frequency of invasive ventilation

Technical specs

CSV column name:

CD_FREQ_INV_VENTIL

Only when:

Required:

true

Options
LabelValue
Full-time1
Part-time2
Unknown99
choice

Specify the number of hours per day of invasive ventilation

Technical specs

CSV column name:

CD_H_INV_VENTIL

Only when:

Required:

true

Options
LabelValue
Equal or more than 16h/24h1
Less than 16h/24h2
choice

Does the patient need assistance in airway clearance and/or secretion mobilisation?

Technical specs

CSV column name:

CD_ASSTNC_ACL_SECMOB

Only when:

Required:

true

Stable:

true

Options
LabelValue
Yes1
No0
Unknown99
multichoice

Type of assistance

Help

Select all that apply

Technical specs

CSV column name:

CD_ASSTNC

Only when:

Required:

false

Stable:

true

Options
LabelValue
SuctionFL_ASSTNC_SUCT
Chest percussionFL_ASSTNC_CPC
Cough Assist DeviceFL_ASSTNC_CAD
IPPV (Intermittent positive-pressure ventilation)FL_ASSTNC_IPPV
OtherFL_ASSTNC_OTH
Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Procedure

Data element:

ProcedureType

Nested option fields
  • When FL_ASSTNC_SUCT Is selected:
    choice

    Frequency

    Technical specs

    CSV column name:

    CD_ASSTNC|CD_ASSTNC_FREQ_SUCT

    Required:

    false

    Options
    LabelValue
    Daily1
    Weekly2
    Occasionally3
  • When FL_ASSTNC_CPC Is selected:
    choice

    Frequency

    Technical specs

    CSV column name:

    CD_ASSTNC|CD_ASSTNC_FREQ_CPC

    Required:

    false

    Options
    LabelValue
    Daily1
    Weekly2
    Occasionally3
  • When FL_ASSTNC_CAD Is selected:
    choice

    Frequency

    Technical specs

    CSV column name:

    CD_ASSTNC|CD_ASSTNC_FREQ_CAD

    Required:

    false

    Options
    LabelValue
    Daily1
    Weekly2
    Occasionally3
  • When FL_ASSTNC_IPPV Is selected:
    choice

    Frequency

    Technical specs

    CSV column name:

    CD_ASSTNC|CD_ASSTNC_FREQ_IPPV

    Required:

    false

    Options
    LabelValue
    Daily1
    Weekly2
    Occasionally3
  • When FL_ASSTNC_OTH Is selected:
    text

    Please specify

    Technical specs

    CSV column name:

    CD_ASSTNC|TX_ASSTNC_OTH

    Required:

    false

    Stable:

    true

    choice

    Frequency

    Technical specs

    CSV column name:

    CD_ASSTNC|CD_ASSTNC_FREQ_OTH

    Required:

    false

    Stable:

    true

    Options
    LabelValue
    Daily1
    Weekly2
    Occasionally3
choice

Has the patient had a Forced Vital Capacity (FVC) test?

Technical specs

CSV column name:

CD_FVC_TST

Only when:

Required:

true

Options
LabelValue
Yes50834005
No0
Unknown99
Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Procedure

Data element:

ProcedureName

date

Date of FVC test

Help

Please provide the most recent FVC test result.

Technical specs

Format:

DD/MM/YYYY

CSV column name:

DT_FVC_TST

Only when:

Required:

true

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.Procedure

Data element:

ProcedureStartDate

Validation
  • Date of FVC test cannot be in the future (error)
  • Date of FVC test cannot be before date of birth (error)
  • Date of FVC test cannot be after date of death (error)
number

FVC (mL)

Technical specs

CSV column name:

MS_FVC

Only when:

Required:

true

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.GeneralMeasurement

Data element:

ResultValue

Validation
  • FVC in ml cannot be less than 100 (error)
  • FVC in ml cannot be more than 10000 (error)
number

FVC predicted (%)

Technical specs

CSV column name:

MS_FVC_PRED

Only when:

Required:

true

Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.GeneralMeasurement

Data element:

Resultvalue

Validation
  • FVC predicted in % cannot be less than 1 (error)
  • FVC predicted in % cannot be more than 150 (error)

3.3.8 Muscle Biopsy

choice

Previous muscle biopsy

Technical specs

CSV column name:

CD_PREV_MUSC_BIOSY

Only when:

Required:

true

Stable:

true

Options
LabelValue
Yes1
No0
Unknown99
Mapping of the clinical building blocks (indicative only)

Concept:

be.en.hd.TransferProcedure

Data element:

ProcedureType

date

Date of biopsy

Technical specs

Format:

DD/MM/YYYY

CSV column name:

DT_PREV_MUSC_BIOSY

Only when:

Required:

true

Stable:

true

Validation
  • Date of muscle biopsy cannot be after date of death (error)
  • Date of muscle biopsy cannot be in the future (error)
  • Date of muscle biopsy cannot be before the date of birth (error)

3.3.9 Clinical Trials

multichoice

Has the patient ever participated in a clinical trial?

Technical specs

CSV column name:

CD_PTCP_CTR

Only when:

Required:

true

Stable:

true

Options
LabelValue
CurrentlyFL_PTCP_CTR_CURLY
PreviouslyFL_PTCP_CTR_PREVLY
NeverFL_PTCP_CTR_NEVR
UnknownFL_PTCP_CTR_UNK
Validation
  • Please complete the 'Clinical Trials' information (error)
  • Please complete the 'Clinical Trials' information (error)
list

Clinical trial(s) - Currently

This is a container for multiple answers. See the reference documentation for more details. Below you can find the information about the fields of the container

Element conditions
MessageExpression
Length of involved drug (in clinical trial) cannot be longer than 80 characterstypeof $['TX_NAM_DRUG'] === 'string'?$['TX_NAM_DRUG'].length
List items
text

Name of trial

Technical specs

CSV column name:

clinical_trials_curr|0|TX_NAM_TRIA

Required:

true

Stable:

true

text

Name of drug

Technical specs

CSV column name:

clinical_trials_curr|0|TX_NAM_DRUG

Required:

true

Stable:

true

list

Clinical trial(s) - Previously

This is a container for multiple answers. See the reference documentation for more details. Below you can find the information about the fields of the container

Element conditions
MessageExpression
Length of involved drug (in clinical trial) cannot be longer than 80 characterstypeof $['TX_NAM_DRUG'] === 'string'?$['TX_NAM_DRUG'].length
List items
text

Name of trial

Technical specs

CSV column name:

clinical_trials_prev|0|TX_NAM_TRIA

Required:

true

Stable:

true

text

Name of drug

Technical specs

CSV column name:

clinical_trials_prev|0|TX_NAM_DRUG

Required:

true

Stable:

true

3.3.10 Other Registries

choice

In addition to the BNMDR, is the patient currently part of another registry and/or natural history study?

Technical specs

CSV column name:

CD_OTH_REG_STDY

Only when:

Required:

true

Stable:

true

Options
LabelValue
Yes1
No0
Unknown99
Validation
  • Please complete the 'Name of registry' information (error)
list

Name of registry or natural history study

This is a container for multiple answers. See the reference documentation for more details. Below you can find the information about the fields of the container

Element conditions
MessageExpression
Length of registry name or natural history study cannot be longer than 80 characterstypeof $['TX_REG_STDY'] === 'string'?$['TX_REG_STDY'].length
List items
text

Name of registry or natural history study

Technical specs

CSV column name:

name_of_registry_or_natural_history_study|TX_REG_STDY

Required:

false

Stable:

true

3.3.11 Family History

choice

Other affected family members

Technical specs

CSV column name:

CD_OTH_AFFECT_FAM_MEM

Only when:

Required:

true

Stable:

true

Options
LabelValue
Yes1
No0
Unknown99
multichoice

Please state kinship (select all that apply)

Technical specs

CSV column name:

CD_FAM_KINSHIP

Only when:

Required:

false

Stable:

true

Options
LabelValue
MotherFL_FAM_MOTH
FatherFL_FAM_FATH
DaughterFL_FAM_DAUGHT
SonFL_FAM_SON
BrotherFL_FAM_BROTH
Half brotherFL_FAM_HALF_BROTH
SisterFL_FAM_SIST
Half sisterFL_FAM_HALF_SIST
NieceFL_FAM_NIECE
NephewFL_FAM_NEPH
Maternal uncleFL_FAM_MATER_UNCLE
Paternal uncleFL_FAM_PATER_UNCLE
Maternal auntFL_FAM_MATER_AUNT
Paternal auntFL_FAM_PATER_AUNT
Maternal cousinFL_FAM_MATER_COUSN
Paternal cousinFL_FAM_PATER_COUSN
Maternal grandfatherFL_FAM_MATER_GFATH
Paternal grandfatherFL_FAM_PATER_GFATH
Maternal grandmotherFL_FAM_MATER_GMOTH
Paternal grandmotherFL_FAM_PATER_GMOTH
GranddaughterFL_FAM_GDAUGHT
GrandsonFL_FAM_GSON