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European Cystic Fibrosis Society (ECFS) winter meeting of experts

Winter meetings of European Cystic Fibrosis Society were held in Brussels (Belgium) on 23-25 January (The ECFS Winter Meetings: Board, Clinical Trials Network, Patient Registry and Standards of Care meetings).

Chief Researcher of the Genetic Epidemiology Laboratory of FSBI RCMG (headed by Prof. Zinchenko R.A., Doctor of medical science), and Prof. Kashirskaya N.Y., Doctor of medical science, worked in the group of certified Cystic Fibrosis Centers, engaged in scientific research, and in the group of European Register of Patients with Cystic Fibrosis and Standards of Therapy ( https://www.ecfs.eu/projects/ecfs-patient-registry/annual-reports ).

They discussed the amendment of information submitted for the year 2017. Today, the 2017 ECFS-PR database is the largest in the world and includes information on more than 48,600 CF patients from 35 countries participating in the Register (in 2016, 44,719 CF patients from 31 countries). They also planned the work on entering data for 2018.

The Russian Registry of Cystic Fibrosis Patients Group proposed a pilot program on using ECFSTracker 2 for data recording in the Register for 2018 by two Federal CF Centers (FSBI RCMG and FSBI Pulmonology Research Institute, Federal Medical and Biological Agency of Russia).  

www.ecfs.eu/ecfs-winter-meetings-january-2019