Registry and cystic fibrosis in figures

Cystic Fibrosis Registry history

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. Data collection, as well as data the quality controls, are ensured by Vaincre la Mucoviscidose.
 
A Steering Committee was established in 2009 with the aim of providing a strategic vision and arbitration in relation to scientific projects. 

Since 2008, the Registry has responded to the call for qualification by the French Registries Evaluation Committee. In 2021, it obtained B (for means and methods), A (for its interest in public health) and A (for its contribution to research) notes.

*The information provided on this website is intended to improve, not to replace, the relationship that exists between the patient (or visitor to the website) and healthcare professionals.

©Fotolia -  Sergey Nivens