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Last Updated: Monday, 06 April 2020


Engage all participants involved in cystic fibrosis clinical research 


Since 2002, France has required and implemented a neonatal tracking of cystic fibrosis. To date 6200 patients, registered in the “Registre Français de la Mucoviscidose” (French register for cystic fibrosis) are being followed in the 45 health centers specialized in cystic fibrosis care called “Centre de Resources et de Compétence de la Mucoviscidose” (CRCM).

The Cystic Fibrosis National Clinical Research Network  (PNRC) enables and supports the participation of the CRCM’s in the clinical research. The network is based on an inter-regional support based on the same map set by the “Organisation des Délégations Inter-Régionales à la Recherche Clinique” (DIRC) (Organization of inter-region delegations for clinical research) created in 2006 and which the “Centre National de Gestion des Essais de Produits de Santé” (CeNGEPS) (National center managing health care product trials) has been using since 2007.


The PNCR management team is composed by Medical doctors and nurses involved in clinical research from 7 CRCM’s, each representing one of the inter-regional network, and by representatives from the organization “Vaincre la Mucoviscidose”. An Operations Team oversees the operation of the national network and each inter-region involved is overlooked by clinical research coordinator.

PNCR is solely funded by the organization “Vaincre la Muscoviscidose”.

5 out of the 7 CRM’s contributing to the PNCR management team are also member of the European network (ECFS – CTN) ensuring a close collaboration between the French and European networks.