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Belgian Cystic Fibrosis registry

The BMR-RBM was started in 1999 as a scientific project initiated by the MedicalCommittee 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. A public report is available online on the website of the Institute.

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