The European Cystic Fibrosis Society Patient Registry Report for 2018 Published

A national patient registry plays an important role in CF Care. A patient registry publishes important annual data on characteristics of particular disease in a particular country and helps create the conditions for forward planning, research and clinical trials. In fact many Pharmaceutical companies do not carry out clinical trials for new drugs in countries that do not have a registry.

The European Cystic Fibrosis Society Patient Registry (ECFSPR) brings together all the existing patient registries in Europe to help provide a Europe wide annual snap-shot that provides invaluable strategic information that will improve patient care and indeed also allows for comparisons between countries

The ECFSPR is making on going efforts to make this data as accessible as possible, including to patients and their families. 

The 2018 Report and an 'At-a-Glance report' containing key information, from the ECFSPR Annual Report, relevant for people with CF and their families, and anyone wishing to know a little more about the disease can be downloaded below.

Interactive maps with country-specific information are available on the homepage of the ECFS website, which you can access by clicking here. 

There are 'country posters' with information and basic statistics from the Registry. The posters are published online, click here to view.

For more detailed information about the Registry please visit the patient-dedicated page on the website via the link below.

For more information on CF in Ireland, visit the Cystic Fibrosis Registry of Ireland website below.