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.
Cystic fibrosis 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 CF registry 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 Registry started in 1998 as a scientific research project on the initiative of the Medical Committee of the Belgian Cystic Fibrosis patients’ Association (BCFA) and the 7 reference centres. Since 2006 it is hosted and managed by Sciensano.
The Cystic Fibrosis (CF) registry lies within the framework of the “CF-Convention”, an agreement on quality of care for patients with CF signed between the National Institute for Health and Disability Insurance (NIDHI) and the Belgian CF-reference centres (see section ‘External collaborations of Sciensano’ below).
External collaborations of Sciensano
CF convention centres:
- CHR Citadelle-Liège - CHC, Liège
- Cliniques Universitaires Saint-Luc, Bruxelles
- Hôpital Universitaire Des Enfants Reine Fabiola (HUDERF) — Hôpital Erasme, ULB-Bruxelles
- UZ Antwerpen – GZA
- UZ Brussel
- UZ Gent
- UZ Leuven