VLM

The French Cystic Fibrosis (CF) Patient Registry, established in 1992 and coordinated by Vaincre la Mucoviscidose, served as a core data source within the REMEDIA project. This national longitudinal registry includes over 7,500 individuals—covering approximately 95% of the CF population in France—and provides annually collected, clinical data on disease progression, treatment, and outcomes.

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.

In the context of REMEDIA, this registry was integrated into a broader exposome-based analytical framework aimed at investigating environmental contributions to respiratory health trajectories. Using unsupervised clustering and longitudinal modeling approaches, the project assessed associations between environmental exposures and lung function evolution.

Summary data table

To come…