Jan 16, 2025: Our first profile of 2025: The Belgian Cystic Fibrosis Registry

There are at least 1,400 people living with Cystic Fibrosis (CF) in Belgium, and the Belgian Cystic Fibrosis Registry (started in 1998) covers about 90-95% of CF patients living in Belgium. By collecting data on almost all patients with CF cared for in Belgium, the BCFR gives a good and quite complete picture of the epidemiology of the disease and the evolution of the health status of CF patients.

Belgian Cystic Fibrosis Registry (Belgium) **

Database Contact Data

Geraldine Daneau
Sciensano
Rue Juliette Wytsmanstraat 14
1050 Brussels
BELGIUM
Email: Geraldine.Daneau@sciensano.be

Alternate Contact

You may also contact the registry via this page - https://www.sciensano.be/en/about-sciensano/contact-sciensano

References of Studies Using/Describing Database

1. Lebecque P, Bauraind O, Thimmesch M. Mucoviscidose : un regard sur la situation en Belgique en 2022 [Cystic fibrosis - A look at Belgium in 2022]. Rev Med Liege. 2022 Sep;77(9):532-537. French.

2. Olesen HV, Drevinek P, Gulmans VA, Hatziagorou E, Jung A, Mei-Zahav M, Stojnic N, Thomas M, Zolin A; ECFSPR Steering Group. Cystic fibrosis related diabetes in Europe: Prevalence, risk factors and outcome; Olesen et al. J Cyst Fibros. 2020 Mar;19(2):321-327.

3. Boboli H, Boemer F, Mastouri M, Seghaye MC. Dépistage néonatal de la mucoviscidose : vers une implémentation nationale en Belgique en 2019 [Neonatal screening for cystic fibrosis : towards a national implementation in Belgium in 2019]. Rev Med Liege. 2018 Oct;73(10):497-501. French.

4. Libeert D, Declercq D, Wanyama S, Thomas M, Van Daele S, De Baets F, Van Biervliet S. The effect of enteral tube feeding in cystic fibrosis: A registry based study. J Cyst Fibros. 2018 Mar;17(2):264-270. 

5. De Wachter E, Thomas M, Wanyama SS, Seneca S, Malfroot A. What can the CF registry tell us about rare CFTR-mutations? A Belgian study. Orphanet J Rare Dis. 2017 Aug 22;12(1):142.

6. De Boeck K, Munck A, de Monestrol I, Gulmans V, Lemonnier L, Middleton PG, Wanyama S, Thomas M. Does newborn screening influence the young cystic fibrosis cohort included in national registries? Eur Respir J. 2017 Jan 11;49(1):1600686.

7. Dewulf J, Vermeulen F, Wanyama S, Thomas M, Proesmans M, Dupont L, De Boeck K. Treatment burden in patients with at least one class IV or V CFTR mutation. Pediatr Pulmonol. 2015 Dec;50(12):1230-6.

8. Thomas M, Lemonnier L, Gulmans V, Naehrlich L, Vermeulen F, Cuppens H, Castellani C, Norek A, De Boeck K. Is there evidence for correct diagnosis in cystic fibrosis registries? J Cyst Fibros. 2014 May;13(3):275-80.

9. De Boeck K, Vermeulen F, Wanyama S, Thomas M; members of the Belgian CF Registry. Inhaled corticosteroids and lower lung function decline in young children with cystic fibrosis. Eur Respir J. 2011 May;37(5):1091-5. 

10. Leal T, Reychler G, Mailleux P, Gigi J, Godding V, Lebecque P. A specific database for providing local and national level of integration of clinical data in cystic fibrosis. J Cyst Fibros. 2007 May;6(3):187-93.

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