Welcome to the European Registry for Cystic Fibrosis

The European Cystic Fibrosis Registry Links/downloads (ECFR) is an ECFS supported project dedicated to collecting demographic and clinical data from patients with cystic fibrosis living all over Europe. The aims of the registry are

* To measure and survey all health associated aspects of cystic fibrosis in Europe and to compare clinical data from different centers and different countries in order promote new standards of care. * To provide data for epidemiological research on European level, country level and center level. * To identify areas that need further research and patients with relatively rare phenotypes or genotypes suitable for multicentre clinical trials.

We have developed a consensus on a set of clinically applicable definitions of key variables facilitating comparison of clinical data throughout the CF community, both in Europe and worldwide. We welcome data, from existing national registries as well as countries or centers without a registry to whom we offer an online software solution for registry, data entry and management. An annual report will be available on country level, as well as individual center data for the benefit of the centers' directors.

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