SCIENTIFIC INSTITUTE OF PUBLIC HEALTH

OD Public Health and Surveillance 

The Belgian Cystic Fibrosis Registry
(Belgisch Mucoviscidose Register - Registre Belge de la Mucoviscidose - BMR-RBM)

Update : 08/07/2014
The Cystic Fibrosis (CF) registry lies within the framework of the "CF-Convention" (in French or in Dutch), an agreement concerning quality of care of CF-patients between the National Institute for Sickness and Invalidity Insurance ( INAMI/RIZIV) and the Belgian CF-"convention centres" . From 1998 till 2005, it was coordinated by the Free University of Brussels and from 2006 onwards it is coordinated by the section of Epidemiology of the IPH.

Objectives

Methods


Year of implementation
since 2006

Persons to contact
Muriel Thomas Tel. : + 32 2 642 50 23
Herwig Jansen Tel. : + 32 2 642 57 86
Viviane Van Casteren Tel. : + 32 2 642 50 30

Level of accomplishment
2006 : preliminary phase : implementation of the existing BMR-RBM registry at the IPH
2007 : data collection 2005 and 2006

Publications
  1. Articles published in scientific journals
    1. Sevens C, Jansen H.
      The Belgian CF registry (BMR-RBM)
      Journal of Cystic Fibrosis 2007;6:S84
    2. Jansen H, van der Steichel P, Depoorter AM, Sevens C.
      Evaluation and evolution of the national Belgian CF database
      Journal of Cystic Fibrosis 2007;6:S84
    3. Sevens C, Jansen H.
      Het Belgisch Mucoviscidose Register (BMR-RBM)
      Percentiel/Percentile 2005;10:98-103
  2. Abstracts of communications (available on request)
    1. Jansen H.
      Socio Economic and QoL status in the Belgian CF Registry
      31st European Cystic Fibrosis Conference, 2008 Prague (Czech Republic)
    2. Sevens C, Jansen H.
      The Belgian CF registry
      30th European Cystic Fibrosis Conference, 2007, Belek (Turkey)
    3. Jansen H, van der Steichel P, Depoorter AM, Sevens C.
      Evaluation and evolution of the national Belgian CF database
      30th European Cystic Fibrosis Conference, 2007, Belek (Turkey)
    4. Sevens C, Jansen H.
      The Belgian Registry for Cystic Fibrosis
      Nationaal Symposium Mucoviscidose, 2004, Leuven (Belgium)
  3. Books and chapters of books

  4. Reports (available on request)
    1. BMR Belgisch Mucoviscidose Register - RBM Registre Belge de la Mucoviscidose
      The Belgian Cystic Fibrosis Registry Summary Report 2011
      Scientific Institute of Public Health, 2014,44 p. Rapport D/2014/2505/02.
    2. BMR Belgisch Mucoviscidose Register - RBM Registre Belge de la Mucoviscidose
      The Belgian Cystic Fibrosis Registry Summary Report 2010
      Scientific Institute of Public Health, 2012,40 p. Rapport D/2012/2505/45.
    3. BMR Belgisch Mucoviscidose Register - RBM Registre Belge de la Mucoviscidose
      The Belgian Cystic Fibrosis Registry Summary Report 2009
      Scientific Institute of Public Health, 2012,44 p. Rapport D/2012/2505/22.
    4. BMR Belgisch Mucoviscidose Register - RBM Registre Belge de la Mucoviscidose
      The Belgian Cystic Fibrosis Registry Summary Report 2008
      Scientific Institute of Public Health, 2011,44 p. Rapport D/2011/2505/28.
    5. BMR Belgisch Mucoviscidose Register - RBM Registre Belge de la Mucoviscidose
      The Belgian Cystic Fibrosis Registry Annual Report 2007
      Scientific Institute of Public Health, November 2009,29 p. Rapport D/2009/2505/57.

Sources of financing
National Institute for Sickness and Invalidity Insurance (INAMI/RIZIV)

External collaborations of the Institute
CF-convention centers
- CHR Citadelle-Liège - CHC-Montegnée
- Cliniques Universitaires Saint-Luc, Bruxelles
- Hôpital Universitaire Des Enfants Reine Fabiola (HUDERF) - Hôpital Erasme, ULB-Bruxelles
- St-Vincentiusziekenhuis Antwerpen - UZ-Antwerpen
- UZ-Brussel
- UZ-Gent
- UZ-Leuven
Belgian Association against Cystic Fibrosis (BVSM - ABLM)
 

Keywords

BELGIUM , BMR-RBM, CONVENTION, CF, CYSTIC FIBROSIS, MUCOVISCIDOSE, QUALITY, QUALITY IMPROVEMENT, QUALITY OF CARE, REGISTRY, RIZIV/INAMI