European Cystic Fibrosis Society

The clinical management of Cystic Fibrosis (CF) is constantly evolving. The continuous improvement in survival of CF The clinical management of Cystic Fibrosis (CF) is constantly evolving. The continuous improvement in survival of CF patients is a result of changes in the understanding of the pathogenesis of the disease and the development of new methods and therapies to improve nutrition, mucociliary clearance and antimicrobial therapy. The comparison of CF populations is therefore essential for the development of standards for clinical practice.

The attempt to develop a European CF Registry started around 1995 in the Paris meeting sponsored by the ICF(M)A and hosted by the French CF Association. However, it was felt that the attempt to construct a large and complex database was too ambitious at that time. Subsequently there was the Roche database that produced important and valuable information. However, it was very expensive to run and closed when the funding stopped. In 2003, representatives of national registries met to discuss the building of a European Registry.

In 2006, under the EU Framework 6 initiative, funding for a Europe-wide registry led by Anil Mehta (Dundee) was awarded as part of the European Coordination Action for Research in Cystic Fibrosis, EuroCareCF. The aim was to provide a registry to collect demographic data, and optionally clinical data for all patients with CF in Europe. EuroCareCF and ECFS have been working in close partnership to build this registry, also collaborating with CF Foundation (USA).

In 2008, EuroCareCF project closed, but the ECFS working group on the registry continued the work. At the moment, the registry collects data mainly from national CF registries, but a pilot study is being carried out for countries without a national registry, for which specially developed data-entry software is provided.

To ensure that all countries are represented and their views heard, a special session on the registry is held every year during the ECFS conference. Every three years a working group, consisting of representatives from all countries, elects a steering committee to determine the use of the data in accordance with patient consents.