The European Cystic Fibrosis Society Patient Registry (ECFSPR) provides reports with key information about how cystic fibrosis (CF) affects the lives of patients and their relaties throughout Europe, including Russia.
The ECFSPR gathers, evaluates, and compares information about people with CF living in Europe and neighboring countries, who have agreed to be included in the registry. This information lets us better research CF as well as facilitates the implementation of new European standards in care and treatment, scientific studies, and helps inform those responsible for planning state healthcare programs.
A brief report from the 2016 European Patient Registry.
More information about ECFSPR activities can be found on the organization’s website.
The full report can be found here (June 2018).
The Russian translation was provided upon request by the Ostrov Charity Foundation (September 2018)
The translation editor was N. Y. Kashirskaya — chief researcher at the Genetic Epidemiology Laboratory, SRI Research Center for Medical Genetics; member of the ECFS neonatal screening work group and registry; PhD; professor.