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History and organisation

The ONM (French Cystic Fibrosis Monitoring Centre) created in 1992 on the initiative of the association, became the French Cystic Fibrosis Patient Registry in 2006.

By supporting the creation and management of the Registry, the association aims to provide an exhaustive, high-quality database for researchers to facilitate studies and help in the advancement of research. More specifically, this tool has various objectives:

1. Descriptive and analytical epidemiology
2. Help for identifying priority issues in terms of care and research and for setting up clinical trials.
3. Evaluation of healthcare practices
4. To guide parents and patients in their personal choices and to guide the association and other institutional partners in their strategic choices
 
Data collection is carried out using a questionnaire comprised of three forms, filled out once per year by healthcare centres. The sending and receipt of questionnaires, as well the quality controls of the data, are ensured by the “Vaincre la Mucoviscidose” association. Analyses are carried out in conjunction with the INED (French National Institute of Demographic Studies).
 
A Steering Committee was established in 2009 with the aim of providing a strategic vision and arbitration in relation to scientific projects. 
 
In 2009, the Registry was qualified by the CNR-MR (French National Committee of Registries - Rare Diseases) for 3 years, renewed for 4 years in 2011.