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    Overview
    Alternative title
    Belgisch mucoviscidoseregister, Registre belge de la mucoviscidose
    Acronym
    BCFR
    Type of information
    Registry data
    Description

    Cystic fibrosis (CF) is a rare hereditary disease. In patients with CF, the mucus secretions have an abnormal viscosity causing dysfunction of many organs such as the lungs and the pancreas. CF affects approximately 1 in 3000 new-borns in Belgium.

    By collecting data on almost all the patients with CF cared for in Belgium, the Belgian Cystic Fibrosis registry (BCFR) gives a good and quite complete picture of the epidemiology of the disease and the evolution of the health status of the patients. Every year, the 7 CF reference centres collect demographic, clinical and social data from the patients they care for after having received their consent. The centres receive from Sciensano a feedback report comparing the results in their centre with those of the other centres. They can share their experiences in order to improve the quality of care in their centre. This method to optimize the care to the patients is called peer learning via benchmarking. The consolidated national results are published in an annual report.

    The registry also offers a unique and well-validated database for clinical research. Physicians from CF centres and researchers can submit questions and study proposals. These requests are discussed and approved by the members of the scientific committee of the BCFR. The results of those studies contribute to a better understanding of the disease epidemiology and improvement of the care and the health status of the patients with CF. The studies are presented at national and international conferences and articles are published in peer-reviewed journals.

    The BCFR also contributes data to and is active in different projects of the European Cystic Fibrosis Patient Registry (ECFSPR). In this way, Belgian data can be compared to those of other European countries.

    Free keywords
    Cystic Fibrosis
    Quality of care
    Monitoring
    quality improvement
    Benchmarking
    Topics
    Health status;
    Health systems » Health system performance » Quality
    Country(ies)
    Belgium
    GEO coverage
    Nuts 3
    Target Population
    Patients
    Age range
    From 0 years
    Sex
    Both
    Data Collection Period
    From 01 January 1998 - Ongoing
    Language(s)
    Dutch,
    English,
    French
    Updating Periodicity
    Annually
    Personal Identifier
    Other
    Level of aggregation
    Aggregated
    Permanent identifier of the data source
    e32072ed-c11d-4283-bf16-c31504ce9e4a
    Terms of data access - URL
    https://www.healthdata.be/dcd/#/collection/BCFR/version/8
    Terms of data access

    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)

    Linkage possible
    Data Owner(s)
    Sciensano
    Contact name
    Sciensano BCFR team
    Contact e-mail
    Geraldine.Daneau@sciensano.be
    Contact info (address)

    Sciensano
    Rue Juliette Wytsmanstraat 14
    1050 Brussels
    Belgium