Winter meeting of experts of the European Cystic Fibrosis Society (ECFS)
The winter meeting of experts of the European Cystic Fibrosis Society (ECFS). Winter Meetings (Patient Registry, CTN, and Standards of Care) took place on January 23-25, 2020 in Brussels (Belgium).
Professor N.Yu. Kashirskaya, Doctor of medical science, Chief researcher at the FSBI RCMG Genetic Epidemiology Laboratory (the Laboratory Head is Professor R. Zinchenko, Doctor of Medical Science,) participated in the Winter Meetings of the European Cystic Fibrosis Society (The ECFS Winter Meetings: Board, Clinical Trials Network, Patient Registry and Standards of Care meetings).
Prof. N.Yu. Kashirskaya made two oral presentations:
- “The National patient registry of Russia” N. Kashirskaya, E. Kondratyeva, E.Amelina, S.Krasovskiy, A.Voronkova, Starinova (“National Register of Russia” N.Yu.Kashirskaya, E.I.Kondratyeva, E .L.Amelina, S.A. Krasovsky, A.Yu. Voronkova, M.A.Starinova)
https://www.ecfs.eu/projects/ecfs-patient-registry/meeting-reports prepared jointly with the Organizing Committee of the Patient Register Cystic fibrosis in the Russian Federation);
- On implementation of the document of the European Cystic Fibrosis Society (ECFS) in Russia: Best Practice Guidelines of the European Cystic Fibrosis Society (ECFS): Revised in 2018 / ECFS best practice guidelines: the 2018 revision.
The Society’s report for 2019 was presented at the meeting. Since 2019, the European Register has been approved as the basis for pharmacovigilance for clinical trials in cystic fibrosis in Europe. https://www.ecfs.eu/projects/ecfs-patient-registry/annual-reports
Recommendations were to update the information in the database of patients with cystic fibrosis for 2018 and enter data for 2019. The 2018 ECFS-PR database is the largest in the world, exceeding 49,000 CF patients from 38 countries participating in the Register. Among new participants in the register are Minsk (Belarus), Bucharest (Romania), two centers from Spain. Estonia, Iceland and Finland plan to join the European Register in 2020.
Much attention was paid to an updated computer program for recording and accounting the CF patients data - ECFSTraker 2.
Board of Standards of Care Group discussed at their meeting some possibilities of practical implementation of Updated ECFS Guidelines for the Cystic Fibrosis Standards of Care, https://www.ecfs.eu/ecfs-standards-care/references (2018г.) in countries with limited economic opportunities. The decision was made to prepare a translation of the Standards of Care into Spanish (Nataliya Kashirskaya, Silvia Gartner).
Sponsorship of the “twinning” program between CF centers from economically developed countries and centers experiencing various types of difficulties (Pavel Drevinek, Jacquelien Noordhoek) has been approved. The first grants will be issued for study visits to problem centers.