"Procedure for providing medical care to patients with cystic fibrosis in the Russian Federation»

Today, there is practically no outpatient care for patients with cystic fibrosis in this country. Therefore, patients have to undergo examination and receive treatment only at the hospital. This increases the risk of their infection with hospital microflora; it is expensive and inconvenient for patients to stay at the hospital. An example of the outpatient dynamic observation of patients is the arrangement of medical care for sick children at the State Budgetary Institution of Healthcare in the Moscow Region “Moscow Regional Consultative and Diagnostic Centre for children (SBIH MR MRCDCC) (Moscow Region) by the staff of the FSBI RCMG Cystic Fibrosis Department (Moscow).

On May 22, 2019, experts in cystic fibrosis met with the staff of the Department for standardizing of medical specialists work at the FSBI Central Research Institute for Organization and Informatization of Healthcare) (FSBI CRIOIHC) of the Ministry of Health of the Russian Federation. The purpose of the meeting was to discuss the documents and steps for development of the Procedure for providing medical care to patients with cystic fibrosis. Kondratyeva E.I., head of the FSBI RCMG Cystic Fibrosis Research and Clinical Department, head of the SBIH MR MRCDCC Cystic Fibrosis Department, physicians of the BIH MR MRCDCC Cystic Fibrosis Department and FSBI RCMG employees: Sherman V.D., Voronkova A.Yu., researchers: Maksimycheva T.Yu., Melianovskaya Yu.L., Zodbinova A.E., as well as Amelina E.L., Candidate of medical science, head of the Cystic Fibrosis Laboratory at the FSI Research Institute of Pulmonology, Federal Medical Biological Agency of Russia, Loshkova E.V., Candidate of medical science, Assistant of the Department of Hospital Pediatrics of FSBI HE Siberian State Medical University of the Ministry of Health of Russia attended the meeting. Ivanova M.A., head of the Department for standardizing of medical specialists work at the FSBI Central Research Institute for Organization and Informatization of Healthcare, Lyutsko V.V., leading researcher, chief expert of FSBI CRIOIHC, and Sachek O.I., chief specialist of the Department presented FSBI CRIOIHC.

The experts discussed the Glossary and were trained in timing for calculating the norms of time and workload of medical personnel in accordance with the practical guidelines of the FSBI CRIOIHC. The timing will start on May 27 and will continue until the beginning of July at the base of the Cystic Fibrosis Department SBIH MR MRCDCC and Moscow Municipal Clinical Hospital No. 57, Department No. 3 of St. Olga Children’s City Hospital (St. Petersburg). In the future, after the data are entered into the program and processed, the work will begin on the preparation of the “Procedure for providing medical care to patients with cystic fibrosis”.

Medical specialists of the cystic fibrosis centers and staff of medical universities of the country will also take part in the work. Doctors express a hope that in the fall of 2019 the work on development of the "Procedure for providing medical care to patients with cystic fibrosis in the Russian