Last update: 17 May 2023
The European Cystic Fibrosis Society Patient Registry collects demographic and clinical data from consenting people with cystic fibrosis (CF) in Europe, in accordance with agreed inclusion criteria and definitions. The information is used to measure, survey and compare aspects of CF and its treatment in participating countries, to deepen our understanding of CF, to improve standards of care, to provide data for epidemiological research and to facilitate public health planning.
The Registry’s database includes data from more than 52,000 people with CF, from 40 participating countries, and longitudinal data from 2008 to 2020. It is a unique resource reflecting the reality of CF across Europe.
For more information about the Registry www.ecfs.eu/projects/ecfs-patient-registry/project