Recoding identifiers for BCFR (BCFRecode)
- Status: inactive
- How to create a CSV file for this data collection?
- Start date: 01/09/2015
- End date creation: 12/08/2024
- End date submission: 12/08/2024
- End date comments: 12/08/2024
1 Background data
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
Required:
true
Stable:
true
1.1 Identification
Patient identificator
Help
Please use an SSIN number when available. If not available, please leave this field empty for an automatically generated identifier, based on name, first name, birth date and sex.
Technical specs
CSV column name:
patient_id
Required:
true
Stable:
true
Validation
The validity of the national register number is checked with the mod97 check.
Fields
Section help
Please use an SSIN number when available. If not available, please leave this field empty for an automatically generated identifier, based on name, first name, birth date and sex.
Internal patient ID
Help
This field can be used to enter an internal ID or reference number. It is available for internal use only and is not transferred to Healthdata. If there is an integration between HD4DP and your organisation's patient administration system, additional patient identification information such as date of birth, sex and SSIN can be automatically enriched based on this internal patient ID. Please do not encode the social security identification number (SSIN) in this field. The SSIN must be encoded in the patient ID field.
Technical specs
CSV column name:
patient_id|internal_patient_id
Required:
false
Generated
Help
The patient_id|generated column can be set to 'TRUE' for an automatically generated patient_id.This column should only be added in case the patient_id is empty. If the column is set to 'TRUE', a patient_id is automatically generated based on the name, first name, date of birth and sex of the patient.
Technical specs
CSV column name:
patient_id|generated
Required:
false
Options
| Label | Value |
| Yes | TRUE |
| No | FALSE |
Name
Technical specs
CSV column name:
patient_id|name
Required:
false
Stable:
true
First name
Technical specs
CSV column name:
patient_id|first_name
Required:
false
Stable:
true
Date of birth
Technical specs
Format:
DD/MM/YYYY
CSV column name:
patient_id|date_of_birth
Required:
false
Stable:
true
Sex
Technical specs
CSV column name:
patient_id|sex
Required:
false
Stable:
true
Options
| Label | Value |
| Female | F |
| Male | M |
| Unknown | U |
Place of residence
Technical specs
CSV column name:
patient_id|place_of_residence
Reference list:
POSTAL_CODE
Required:
false
Stable:
true
Deceased?
Technical specs
CSV column name:
patient_id|deceased
Required:
false
Stable:
true
Options
| Label | Value |
| Yes | TRUE |
| No | FALSE |
Date of death
Technical specs
Format:
DD/MM/YYYY
CSV column name:
patient_id|date_of_death
Only when:
Required:
false
Stable:
true
Order in the family
Technical specs
CSV column name:
order_in_the_family
Required:
false
Stable:
true
Country of origin mother
Technical specs
CSV column name:
country_of_origin_mother
Reference list:
COUNTRY
Required:
false
Stable:
true
Country of origin father
Technical specs
CSV column name:
country_of_origin_father
Reference list:
COUNTRY
Required:
false
Stable:
true
Height father (cm)
Technical specs
CSV column name:
height_father_cm
Required:
false
Stable:
true
(Height father) measured
Technical specs
CSV column name:
height_father_measured
Required:
false
Stable:
true
Options
| Label | Value |
| Yes | TRUE |
| No | FALSE |
Height mother (cm)
Technical specs
CSV column name:
height_mother_cm
Required:
false
Stable:
true
(Height mother) measured
Technical specs
CSV column name:
height_mother_measured
Required:
false
Stable:
true
Options
| Label | Value |
| Yes | TRUE |
| No | FALSE |
Received 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:
received_transplant
Required:
false
Stable:
true
Options
| Label | Value |
| No | 1 |
| Yes | 2 |
| Missing Data | 999 |
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:
false
Stable:
true
Options
| Label | Value |
| No | 1 |
| Yes | 2 |
| To be confirmed | 3 |
| Unknown | 4 |
| Missing Data | 999 |
1.2 Diagnosis
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
Symptoms
Technical specs
CSV column name:
symptoms
Required:
false
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 other Is selected:text
Specify
Technical specs
CSV column name:
symptoms|specify
Required:
false
Stable:
true
Neonatal screening test
Technical specs
CSV column name:
neonatal_screening_test
Required:
false
Stable:
true
Options
| Label | Value |
| Unknown | 0 |
| Not done | 1 |
| Performed positive | 2 |
| Performed negative | 3 |
| Performed result unknown | 4 |
| Missing Data | 999 |
1.3 Sweat test
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
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 |
Chloride
Technical specs
CSV column name:
chloride
Required:
false
Stable:
true
Sodium
Technical specs
CSV column name:
sodium
Required:
false
Stable:
true
1.4 Genotype
Legacy Name
Help
Please report always the legacy name, if known.
Fields
Section help
Please report always the legacy name, if known.
Date of genotype
Technical specs
Format:
DD/MM/YYYY
CSV column name:
legacy_name|date_of_genotype
Required:
false
Stable:
true
Chromosome 1
Technical specs
CSV column name:
legacy_name|chromosome_1
Reference list:
CHROMOSOME
Required:
false
Stable:
true
Chromosome 1 other
Technical specs
CSV column name:
legacy_name|chromosome_1_other
Only when:
Required:
false
Stable:
true
T Status 1
Technical specs
CSV column name:
legacy_name|t_status_1
Required:
false
Stable:
true
Options
| Label | Value |
| Not applicable | 0 |
| 5T | 1 |
| 7T | 2 |
| 9T | 3 |
| Missing Data | 999 |
Chromosome 2
Technical specs
CSV column name:
legacy_name|chromosome_2
Reference list:
CHROMOSOME
Required:
false
Stable:
true
Chromosome 2 other
Technical specs
CSV column name:
legacy_name|chromosome_2_other
Only when:
Required:
false
Stable:
true
T Status 2
Technical specs
CSV column name:
legacy_name|t_status_2
Required:
false
Stable:
true
Options
| Label | Value |
| Not applicable | 0 |
| 5T | 1 |
| 7T | 2 |
| 9T | 3 |
| Missing Data | 999 |
cDNA Name
Fields
Date genotype (cDNA name)
Technical specs
Format:
DD/MM/YYYY
CSV column name:
cdna_name|date_genotype_cdna_name
Required:
false
Stable:
true
Chromosome 1 (cDNA name)
Technical specs
CSV column name:
cdna_name|chromosome_1_cdna_name
Reference list:
CHROMOSOME_NEW
Required:
false
Stable:
true
Chromosome 1 other (cDNA name)
Technical specs
CSV column name:
cdna_name|chromosome_1_other_cdna_name
Only when:
Required:
false
Stable:
true
T Status 1 (cDNA name)
Technical specs
CSV column name:
cdna_name|t_status_1_cdna_name
Required:
false
Stable:
true
Options
| Label | Value |
| Not applicable | 0 |
| c.1210-12T(5) | 1 |
| c.1210-12T(7) | 2 |
| c.1210-12T(9) | 3 |
| Missing Data | 999 |
Chromosome 2 (cDNA name)
Technical specs
CSV column name:
cdna_name|chromosome_2_cdna_name
Reference list:
CHROMOSOME_NEW
Required:
false
Stable:
true
Chromosome 2 other (cDNA name)
Technical specs
CSV column name:
cdna_name|chromosome_2_other_cdna_name
Only when:
Required:
false
Stable:
true
T Status 2 (cDNA name)
Technical specs
CSV column name:
cdna_name|t_status_2_cdna_name
Required:
false
Stable:
true
Options
| Label | Value |
| Not applicable | 0 |
| c.1210-12T(5) | 1 |
| c.1210-12T(7) | 2 |
| c.1210-12T(9) | 3 |
| Missing Data | 999 |
Protein Name
Fields
Date of genotype (protein name)
Technical specs
Format:
DD/MM/YYYY
CSV column name:
protein_name|date_of_genotype_protein_name
Required:
false
Stable:
true
Chromosome 1 (Protein name)
Technical specs
CSV column name:
protein_name|chromosome_1_protein_name
Reference list:
CHROMOSOME_PROTEIN
Required:
false
Stable:
true
Chromosome 1 other (Protein name)
Technical specs
CSV column name:
protein_name|chromosome_1_other_protein_name
Only when:
Required:
false
Stable:
true
Chromosome 2 (Protein name)
Technical specs
CSV column name:
protein_name|chromosome_2_protein_name
Reference list:
CHROMOSOME_PROTEIN
Required:
false
Stable:
true
Chromosome 2 other (Protein name)
Technical specs
CSV column name:
protein_name|chromosome_2_other_protein_name
Only when:
Required:
false
Stable:
true
1.5 Nasal Transepithelial Potential Difference
Nasal transepithelial potential difference
Technical specs
CSV column name:
nasal_transepithelial_potential_difference
Required:
false
Stable:
true
Options
| Label | Value |
| Not Executed | 2 |
| Normal | 4 |
| Evocative / Abnormal | 5 |
| Inconclusive | 6 |
| Missing Data | 999 |
Date transepithelial potential difference
Technical specs
Format:
DD/MM/YYYY
CSV column name:
date_transepithelial_potential_difference
Only when:
Required:
false
Stable:
true
2 Transplantation
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
List items
Type of transplant
Technical specs
CSV column name:
transplants|0|type_of_transplant
Required:
false
Stable:
true
Options
| Label | Value |
| Lung | 0 |
| Lung-Heart | 1 |
| Liver | 2 |
| Heart | 3 |
| Lung-Liver | 4 |
| Kidney | 5 |
| Liver-Kidney | 6 |
| Missing Data | 999 |
Year of transplant
Technical specs
CSV column name:
transplants|0|year_of_transplant
Required:
false
Stable:
true
Precise date of first 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
Required:
false
Stable:
true
Precise date of the most recent Tx
Technical specs
Format:
DD/MM/YYYY
CSV column name:
transplants|0|precise_date_of_the_most_recent_tx
Required:
false
Stable:
true
3 Social Data
3.1 Family composition
Household composition
Technical specs
CSV column name:
household_composition
Required:
false
Stable:
true
Options
| Label | Value |
| Unchanged | 1 |
| Changed | 2 |
| First Registering | 3 |
| Missing Data | 999 |
Number of siblings including the patient
Technical specs
CSV column name:
number_of_siblings_including_the_patient
Required:
false
Stable:
true
Number of siblings with CF
Technical specs
CSV column name:
number_of_siblings_with_cf
Required:
false
Stable:
true
Number of siblings deceased from CF
Technical specs
CSV column name:
number_of_siblings_deceased_from_cf
Required:
false
Stable:
true