Site updated 30 January 2014
The clinical management of cystic fibrosis 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 purpose of the ECFS Patient Registry is to measure, survey and compare aspects of cystic fibrosis and its treatment in the participating countries, thereby encouraging new standards of dealing with the disease, to provide data for epidemiological research and to identify special patient groups suitable for multi-centre trials. The information will facilitate long-term planning of health expenditure allocations and developing pan European support systems. For more about the Project.