ECFS Patient Registry (ECFSPR)
Annual reports, online data tool and highlights from the European Cystic Fibrosis Society Patient Registry — a Europe-wide dataset used to measure, survey and compare aspects of CF care and outcomes.
Questions about contributing data or accessing the registry? Contact ecfspr@ecfs.eu.
The registry
The ECFSPR collects data from consenting individuals with cystic fibrosis across Europe and neighbouring countries to measure, survey and compare aspects of CF and its treatment.
Visit the registryInteractive online tool to explore the latest ECFSPR data — filter by country, age group, genotype and clinical outcomes.
Open online report →Reports, highlights & publications
Full ECFSPR Annual Report with demographics, clinical status, microbiology, treatments and outcomes across participating countries.
Download PDF →Short-form highlights summary of the 2024 ECFSPR dataset — key trends, modulator uptake and survival statistics at a glance.
Read highlights →Peer-reviewed studies, abstracts and conference posters that have used ECFSPR data — useful starting point for researchers and care teams.
Browse publications →Map and directory of national CF registries and centres contributing data to the ECFSPR, with contacts for national registry coordinators.
See countries →