Structure
Cystic Fibrosis Department

Научная деятельность
Образовательня и организационная деятельность
Международная деятельность
Лечебная работа  научно-консультативного отдела муковисцидоза
Важная информация для родителей

Research and Clinical Cystic Fibrosis Department of RCMG RAMS (now, FSBI RCMG) was founded in 1990 headed by Professor Kapranov N.I., Doctor of medical science, the RF Honored Worker of Science. The Department operates and coordinates the work of regional centers, such as the Russian Center for Cystic Fibrosis, according to the Ministry of Health Order e No. 224 of September 4, 1993. In 2003, the Moscow branch of the Russian Center for Cystic Fibrosis was established based on N.F. Filatov Children's City Clinical Hospital No. 13. Since November 7, 2015, the Center has been functioning based on the Out-patient Pediatric Department of the Central Clinical Hospital of the Russian Academy of Sciences; since November 2016, it has been located at the SBIH MR MRCDCC.

Department clinical base address (Russian Center for Cystic Fibrosis): Mytischi, ul. Cominterna Str., 24A, build.1

Department Reception telephone number: +7 (495) 587-33-66.

E-mail: 84955873366@mail.ru

Telephone hotline 8-495-228-33-88 (Mon-Fri 10: 00-16: 00).

CYSTIC FIBROSIS RESEARCH AND CLINICAL  DEPARTMENT

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  Elena I. Kondratieva, Professor, Doctor of medical science, doctor of the highest qualification, clinical pharmacologist, geneticist, certified ICH GCP specialist, head of the Cystic Fibrosis Department of State Budgetary Institution of Healthcare of the Moscow Region “Moscow Regional Consultative and Diagnostic Centre for children” (SBIH MR MRCDCC); Member of the Diagnostic Expert Working Group of the European Cystic Fibrosis Society (ECFS); member of the Organizing Committee of the Cystic Fibrosis National Registry

DEPARTMENT STAFF:

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  Nikolay I. Kapranov, scientific consultant of the Centre, the RF Honored Worker of Science, founder of the cystic fibrosis Russian school, Doctor of medical science, Professor

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Lidia A. Shabalova – senior researcher, Candidate of medical science, doctor of the highest qualification

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Viktoria D. Sherman – senior researcher, Candidate of medical science, medical manager

doctor of the highest qualification, clinical pharmacologist, functional diagnostics doctor, certified ICH GCP specialist, Member of the Neonatal Screening Expert Working Group of the European Cystic Fibrosis Society (ECFS)

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Anna Y. Voronkova , senior researcher, Candidate of medical science, pediatrician, certified ICH GCP specialist of the highest qualification, member of the Organizing Committee of the Cystic Fibrosis National Registry

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Viktoria S. Nikonova , senior researcher, Candidate of medical science

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Stanislav A. Krasovsky , senior researcher, Candidate of medical science, doctor of the highest qualification, member of the Organizing Committee of the Cystic Fibrosis National Registry.

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Tatiana Y. Maksimycheva – researcher, pediatrician, nutritionist

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Elena K. Zhekaite – researcher, pediatrician

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Marina A. Starinova , researcher, manager of the member of the Cystic Fibrosis National Registry

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Roman M. Budzinsky, researcher, pediatrician, pulmonologist

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Yulia L. Melianovskaya, researcher, laboratory physician-geneticist

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Aisa E. Zodbinova, researcher, laboratory physician-geneticist

GENETIC GROUP:


Kashirskaya N.Yu., Professor, Doctor of medical science


Petrova N.V., Doctor of biological science

THERAPY GROUP:

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Elena V. Vasina, kinesiotherapist

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Irina O. Fedina , registrar

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Albina I. Kozlova , housekeeping manager, nurse

The Cystic Fibrosis Department based on State Budgetary Institution of Healthcare of the Moscow Region “Moscow Regional Consultative and Diagnostic Centre for children” (SBIH MR MRCDCC) was founded in November 2016 by the Cystic Fibrosis Research and Clinical Department of the Federal Budgetary State Institution Research Centre for Medical Genetics (the head of the Department is Kondratieva E.I., Prof. Dr. med. sc., the Director of RCMG is Kutsev S.I., corr. member). The Department is a clinical base for the Cystic Fibrosis Research and Clinical Department of the FSBI RCMG. The Cystic Fibrosis Department is the biggest inter-regional center for cystic fibrosis in the Russian Federation, all employees of the Department are leading experts and specialists in cystic fibrosis, who have a long-term experience with patients.

The Department provides counseling and examination of children with cystic fibrosis aged 0 to 18 years old, children with suspected cystic fibrosis, and children with positive or dubious neonatal screening for cystic fibrosis. The Department carries out the following: sweat tests using three different methods, DNA-diagnostics, Respiratory Function test (for children over 5 years old), Standard Glucose Tolerance Test (SGTT), glycemic profile, ultrasound examination of abdominal organs, kidneys, CT scan of chest, paranasal sinuses (for children over 5 years old), chest X-ray, counseling by experts (gastroenterologist, endocrinologist, etc.). Counseling by psychologist is provided, if necessary.

The newest technologies for diagnosis and selection of therapy for patients with cystic fibrosis have been introduced – the intestinal potentials difference and intestinal organoid technologies for the cystic fibrosis diagnosis in patients with complex diagnostic search, intestinal organics technology for the selection of targeted therapy.

SBIH MR MRCDCC address: Mytischi, ul. Cominterna Str., 24A, build.1 (check-in from Academician Kargin Street, 29a, a building behind a barrier, close to the Parking). Cystic Fibrosis Department Reception telephone numbers: +7 (495) 587-33-66, Telephone hotline 8-495-228-33-88 (Mon-Fri 10: 00-16: 00).

The Department is located on the first floor of MRCDCC in rooms 61-68 + hall, a separate entrance from the street for patients, a box consisting of two separate wards with an entrance from the street for patients; wards 9, 10, 11 are located on the 2nd floor).

The Centre employs 9 physicians (3 of them with the highest medical qualifications; 2 Doctors of medical science - Kondratieva E.I., the head of Cystic Fibrosis Research and Clinical Department at FSBI RCMG, and Professor Kapranov N.I., the consultant; 2 Candidates of medical science - Sherman V.D. and Voronkova A.Yu., with 15 to 30 years’ experience; Zhekayte Ye.K., pediatrician, Maksimycheva T.Yu., nutritionist, Budzinsky R.M., pulmonologist, and Melianovskaya Yu.L. and Zodbinova A.E. laboratory physicians).

The doctors of the Centre have received training in foreign cystic fibrosis centers (UK, Italy, Germany, and the Netherlands), and have specialized in functional diagnostics, clinical pharmacology, nutrition, gastroenterology, endocrinology.

Vasina E.V., a Kinesiotherapist, studied at St. Petersburg and at the school of Cystic Fibrosis European Congress (Belgrade 2018).

Active outpatient monitoring of the Centre covers 448 patients with CF under 18 years old from Moscow, the Moscow Region, regions of the Russian Federation and foreign countries as of 01 October 2018.

Objectives of the Centre:

  • Maintaining a register of children with cystic fibrosis who attend the department, and maintaining a register of medicines for children with cystic fibrosis aged under 18 from the Moscow Region
  • Arrangement and implementation of measures for cystic fibrosis prevention by examining families having children with cystic fibrosis
  • Provision of highly qualified diagnostic, medical and social assistance in outpatient and inpatient settings to children with cystic fibrosis, aged under 18, who live in the Moscow Region and other regions of the Russian Federation
  • Confirmation of CF diagnosis to newborns examined by the neonatal screening program
  • Active outpatient monitoring and improvement of methods for medical and social rehabilitation of children with cystic fibrosis aged under 18, residing in the Moscow Region and other regions of the Russian Federation
  • Preparation of documents for Medical and Social Assessment (MSA) of patients with cystic fibrosis in the Moscow Region
  • Providing essential medicines, specialized nutrition and medical devices for cystic fibrosis patients aged under 18
  • Ensuring the continuity in the follow-up of CF patients aged under 18 with children's outpatient clinics and other medical and preventive institutions of the Moscow region, as well as with the Cystic Fibrosis Center for adults based on City Clinical Hospital №57
  • Cystic fibrosis counseling and methodological assistance to medical and preventive institutions of the Moscow Region and the Russian Federation
  • Consultations for patients of the Moscow Region and the Russian Federation jointly with Kutsev S.I., the Chief outside specialist in medical genetics of the Ministry of Health of Russia and the Moscow Region
  • Foundation of a cystic fibrosis school for parents and family members of children with cystic fibrosis in the Moscow region
  • Preparation of methodical recommendations, clinical guidelines, national consensus on the problem of CF
  • Interaction with other institutions and departments on the CF diagnosis and the improvement of medical and social care for children with CF in the Moscow region and the Russian Federation.
  • Interaction with social organizations, parents and patients associations, charitable foundations. Arranging of schools for CF patients and their families, webinars for patients
  • Organization of national congresses, scientific and practical conferences, seminars, schools on CF problem for medical specialists.