Site updated 11 March 2019
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.
In the Registry’s database there is data from more than 44,000 people with CF, from 33 participating countries, and longitudinal data from 2008 to 2016. 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