The Russian Association for Cystic Fibrosis Patients published a national consensus on cystic fibrosis. This document specifies standards for the diagnosis and treatment of cystic fibrosis in Russia.
A group of 46 doctors from various fields of medicine worked for three years to create it. In November 2016, the consensus was reviewed by the leading experts on cystic fibrosis from many cities of Russia and it was adopted as the main advisory document for doctors caring for patients with this rare disease.
The document will be published in a limited edition which was made possible with the financial support of the Ostrova Charitable Foundation.
Professor Yelena Kondratyeva, head of the Russian Centre for Cystic Fibrosis and head of the scientific-clinical cystic fibrosis division of the Medico-genetic Scientific Centre, talked about the importance of these advisory documents for the Russian medical community as well as the prospects of treating cystic fibrosis patients in Russia during an interview she had with a medical portal.
“Unlike previous documents, the National Consensus united microbiologists, geneticists and doctors from various fields of medicine. We tried to describe all the aspects associated with this disease – everything from how to treat a sick child at home to the requirements for lung and liver transplantations (there have already been 26 of these operations in Russia so far: 20 lung transplants and six liver transplants). And now we hope that in Russia there will be a consistent approach to patient care. Of course, we would really be glad if Russian patients had access to the same patient care that is already available in Europe, where over half of all patients are adults (so far in Russia only one third of patients are adults).”