The RCMG Cystic Fibrosis Scientific Clinical Department Met with the Head of the European Register of Cystic Fibrosis Patients on February 16, 2022
The staff of the scientific clinical department for cystic fibrosis at the Research Centre for Medical Genetics is responsible for collecting material for the creation of the database «Register of cystic fibrosis patients in the Russian Federation» and the creation of a database of COVID-19 patients. They met with the director of the European Register of Cystic Fibrosis Patients, MD Andreas Jung (Switzerland, Zurich), and with the representatives of Aston Health in the direction of «Orphan Diseases», which provide software support for orphan diseases Registries on February 16, 2022.
The meeting took place on the eve of the 10th anniversary of the Russian Register of cystic fibrosis patients. The lead of the Register, the head of the scientific clinical department of cystic fibrosis at the Research Centre for Medical Genetics, Holder of an Advanced Doctorate in Medical Sciences, Professor Elena Kondratieva, spoke about the history of creation of the Register and its goals, focusing on planning for targeted therapy need and evaluating its effectiveness and safety.
Tatiana Sizova, the head of the therapeutic direction of Aston Health, spoke about the new IT platform and protection of the personal data of patients in the Register.
Senior Researcher of the Department of Cystic Fibrosis at the Research Centre for Medical Genetics, PhD Elena Zhekayte, described how information is being collected about patients who had COVID-19 in the Russian Federation.
The meeting discussed further cooperation and development of the Russian Register as an integral part of the European Register, as well as the importance of the Register in improving assistance to cystic fibrosis patients, planning of the scope of therapy and evaluation of the effectiveness of medical care in the Russian Federation and Europe.
Following are the articles published jointly with the representatives of the organising committees of the countries of the European Register along the COVID-19 in cystic fibrosis patients:
1.Siobhan B Carr, Rebecca Cosgriff, Elena Kondratyeva et al. COVID-19 vaccine prioritisation for people with cystic fibrosis, Journal of Cystic Fibrosis 2021
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8049359/
2.Andreas Jung, Annalisa Orenti, Elena Kondratyeva, Lutz Naehrlich Factors for severe outcomes following SARS-CoV-2 infection in people with cystic fibrosis in Europe. ERJ Open Research 2021
https://openres.ersjournals.com/content/erjor/7/4/00411-2021.full.pdf
3. Tješić-Drinković D, European Cystic Fibrosis COVID project group. Incidence of SARS-CoV-2 in people with cystic fibrosis in Europe between February and June 2020. J Cyst Fibros. Jul 2021
https://www.cysticfibrosisjournal.com/article/S1569-1993(21)00099-0/fulltext
4. Bain R, Cosgriff R, Zampoli M, Elbert A, Burgel PR, Carr SB, Castaños C, Colombo C et al. Clinical characteristics of SARS-CoV-2 infection in children with cystic fibrosis: An international observational study. J Cyst Fibros. 2021