Belgian Cystic Fibrosis Registry
The BMR-RBM was started in 1999 as a scientific project initiated by the Medical Committee of the CF-patient organisation (BVSM-ABLM) and the 7 CF-reference centres in Belgium collecting data of 1998. It was coordinated by the Vrije Universiteit Brussel (VUB). The main sponsor was the CF-Patient organisation, the cosponsor was the Fund Alfonse and Jean Forton of the King Baudouin Foundation. The VUB sponsored the overheads. After 5 years the scientific project came to an end and new sponsors were contacted. In 2006, the RIZIV-INAMI became the principal sponsor and the Registry was transferred to the section of Public Health and Surveillance of the Scientific Institute of Public Health (WIV-ISP). Since then, the WIV-ISP ensures the collection and the management of the data under the supervision of the board of the BMR-RBM and the guidance of a scientific steering group. Since 1999, 7 CF reference centres have been accredited by the National Institute for Health and Disability Insurance (INAMI - RIZIV) and receive financial support. An annual care and revalidation agreement (CF convention) for patients with CF is signed between each of the 7 CF reference centres and the RIZIV-INAMI. Each centre has specific expertise in CF care and ensures multidisciplinary follow-up of the patients in order to provide optimal medical, paramedical, psychological and social care to the patient and their relatives. The Belgian CF Registry lies since 2006 within the framework of the CF convention described above. Participation in collection of data for the CF Registry is one of the obligatory tasks of the CF reference centres.
The objectives of the Registry are to study epidemiological aspects of CF in Belgium, to enhance the role of the registry in the assessment of the quality of care provided to CF patients, to provide a database for scientific research to CF researchers and to participate to the European CF Patient Registry (ECFSPR) and other international projects. The clinical and demographic data is collected for all patients once each year by the treating physician from medical records and consists of more than 200 recorded items. All the reference centres and the INAMI-RIZIV receive each year a national annual report. The centres receive also a centre report and a benchmarking report that compares the results from each centre with data from the other centres in order to improve the quality of care provided to the patients with CF in their respective centres.
Overview
- Alternative Titles / Acronym
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- BCFR
- Keywords
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cystic fibrosis
- Languages
- ENG, FRA, NLD
- Health Themes
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cystic fibrosis (Q178194)
- Health Categories
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Population-based health data registries (public health registries)
- Population Coverage
- Patients with cystic fibrosis cared for at one of the seven cystic fibrosis reference centres.
- Personal Data Categories
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Age Gender Education
- Purposes
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The Belgian Cystic Fibrosis registry (BCFR) annually collects demographic and clinical data from children and adults with cystic fibrosis (CF) living in Belgium and treated in one of the 7 reference CF centres. The registry offers the most complete source of information on the number of patients living with CF in Belgium. It is used to evaluate their health status and the quality of care provided. It also provides decision-makers with precise data needed to manage the disease.
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- Provenance
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- Every year, the 7 CF reference centres collect demographic, clinical and social data from the patients they care for after having received their consent.
- Landing Pages
- Documentation
Temporal Information
- Dataset Modified
- Temporal Coverage
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Start
- Update Frequency
- ANNUAL
- Metadata Dates
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Issued:Modified:
Spatial Information
- Geographic Coverage
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- BE
- NUTS Codes
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http://data.europa.eu/nuts/code/BE
Additional Information
- Dataset Types
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Personal Data
- Applicable Legislation
- Legal Basis
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The Scientific Committee, taking important decisions (meets once a year), is composed of the Sciensano BCFR team, members of each CF center, the Patient Organization, and the NIDHI. The BCFR Board meets more regularly, with one vote per institution (Sciensano, the 7 CF centers, and the patient organization).
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14 JUILLET 1994. - Loi relative à l'assurance obligatoire soins de santé et indemnités coordonnée le 14 juillet 1994.
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- HDAB
- Contact Points
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Geraldine DaneauSciensano
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- Conforms To
- Structured Identifiers
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- https://www.orpha.net/en/research-trials/registry/205942?name=&mode=&country=
- http://10.5.8.138:8080/dataset/7ac64ddd-3125-445c-af23-53e70479bfa1
- https://catalogues.ema.europa.eu/node/4024/administrative-details
- https://fair.healthdata.be/dataset/e32072ed-c11d-4283-bf16-c31504ce9e4a
- https://sciensano.healthdataportal.eu:443/dataset/ce986b46-163a-41a8-a877-ef2beac6381b
- https://www.healthinformationportal.eu/health-information-sources/belgian-cystic-fibrosis-registry
- https://intranet-fdp.sciensano.be/dataset/158d9dad-0b8c-4b3b-881f-941de4966af3
Distributions & Resources
https://www.hda.belgium.be/en/data_request
https://www.hda.belgium.be/en/data_request
Aggregated data can be accessed after analysis by the BCFR team. Access to individual data is possible if necessary (anonymized or pseudonymized, with extra DPA approval). The BCFR Board needs to approve each request. linkage is possible after approval by DPA. a contract and a financial agreement have to be signed for external parties (i.e. other than BCFR partners and Belgian authorities).
https://hddc.blob.core.windows.net/hdfair/dataset/e32072ed-c11d-4283-bf16-c31504ce9e4a/HD_DCD_SPEC_HDBP0001_BCFR_v11.0.1.xlsx
https://raw.githubusercontent.com/sciensanogit/SciensanoDataPortal_distributions/refs/heads/main/datasets/BCFR/datadic.ttl
This file outlines the specifications and parameters for collecting data related to rare diseases within the BCFR.
http://www.iana.org/assignments/media-types/text/turtle