European Cystic Fibrosis Society Patient Registry

The European Cystic Fibrosis Society Patient Registry is operated by the European Cystic Fibrosis Society and collects data from consenting individuals with cystic fibrosis across Europe and neighboring countries through national registries. The information is used to measure, survey and compare aspects of cystic fibrosis and its treatment in participating countries, to deepen understanding of the condition, to improve standards of care, to provide data for epidemiological research and to facilitate public health planning, with access to reports and data available through the registry's website and a research application process.