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European Coordination Action for Research in Cystic Fibrosis

Final Report Summary - EUROCARECF (European Coordination Action for Research in Cystic Fibrosis)

Cystic fibrosis (CF) is a life-shortening, childhood-onset inherited disorder in Europe characterised by progressive lung disease leading to premature death. It is estimated that in the European Union there are about 30 000 CF patients, with one new case per 2 500-3 000 newborns. Mutations in a single gene encoding the cystic fibrosis transmembrane conductance regulator (CFTR) cause CF and a spectrum of related disorders. Despite impressive advances in relating the molecular basis of CF to organ-level disease, life expectancy and quality of life are still limited in CF. The median survival of CF patients in Europe is approximately 27 years.

EUROCARECF aimed to bring together the results of ongoing EU research in the CF field and translating them into better care, treatment and quality of life for CF patients. Towards this goal, EUROCARECF created a European forum for CF and CFTR-related diseases, in which all stakeholders had the opportunity to interact, exchange and collaborate to achieve common goals. EUROCARECF sought to involve actively CF professionals from all European countries, including clinicians, healthcare professionals and basic scientists. To achieve this goal, EUROCARECF worked closely with its principal stakeholder the European Cystic Fibrosis Society (ECFS).

In collaboration with the ECFS, the establishment of a European clinical trial network to perform high quality clinical research, which efficiently evaluates new therapies for CF patients. The ECFS-CTN was composed of 18 centres from 8 European countries together with supporting structures including an executive committee, coordinating centre and different subcommittees. A code of conduct for interactions with pharmaceutical companies has been elaborated and standardised information provided to companies about the network. Protocol review will improve the quality and feasibility of clinical studies undertaken by the network. Moreover, standardisation of outcome parameters will lead to uniform conduct and improved quality performance of clinical trials. A strong partnership with CF patient organisations will increase awareness of the need for efficient clinical research to identify better therapies faster and likely improve patient participation in clinical research.

Over the course of the project, participants and collaborators of EUROCARECF have published outputs of the project in a variety of formats. These include consensus guidelines, original articles and reviews all published in international, peer-reviewed scientific journals. Other project publications include the handbooks of 'hands-on' training courses, the EUROCARECF newsletter (11 issues) and the project website (please see online).