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.
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).
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)
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