neurojourНеврологический журнал имени Л.О. БадалянаL.O. Badalyan Neurological Journal2686-89972712-794XФГАУ «НМИЦ здоровья детей» Минздрава России10.46563/2686-8997-2023-4-2-64-73cgpzynneurojour-96Research ArticleИНФОРМАЦИОННЫЕ МАТЕРИАЛЫINFORMATIONAL MATERIALSКонсенсус в отношении генозаместительной терапии для лечения спинальной мышечной атрофииConsensus on Gene Replacement Therapy for the Treatment for Spinal Muscular AtrophyWorking groupРабочая группаnoemail@neicon.ru202329082023426473Copyright © Working group Р., 20232023Working group Р.Working group Р.Данная работа распространяется под лицензией Creative Commons Attribution 4.0.This work is licensed under a Creative Commons Attribution 4.0 License.https://www.neuro-journal.ru/jour/article/view/96

Состав рабочей группы:

Артемьева Светлана Брониславовна, к.м.н., зав. неврологическим отделением Научно-исследовательского клинического института педиатрии им. Ю.Е. Вельтищева ФГАОУ ВО РНИМУ им. Н.И. Пирогова Минздрава России, Российская Федерация;Белоусова Елена Дмитриевна, проф., д.м.н., заведующая отделом психоневрологии и эпилептологии педиатрии Научно-исследовательского клинического института педиатрии им. Ю.Е. Вельтищева ФГАОУ ВО РНИМУ им. Н.И. Пирогова Минздрава России, Российская Федерация;Влодавец Дмитрий Владимирович, к.м.н., президент Ассоциации детских неврологов в области миологии НеоМио, руководитель Российского детского нервно-мышечного центра при Научно-исследовательском клиническом институте педиатрии и детской хирургии им. академика Ю.Е. Вельтищева ФГАОУ ВО РНИМУ им. Н.И. Пирогова Минздрава России; ведущий научный сотрудник отдела психоневрологии и эпилептологии Научно-исследовательского клинического института педиатрии и детской хирургии им. Ю.Е. Вельтищева ФГАОУ ВО РНИМУ им. Н.И. Пирогова Минздрава России; доцент кафедры неврологии, нейрохирургии и медицинской генетики им. академика Л.О. Бадаляна педиатрического факультета ФГАОУ ВО РНИМУ им. Н.И. Пирогова Мин­здрава России, Российская Федерация;Воронин Сергей Владимирович, к.м.н., главный врач ФГБНУ «Медико-генетический научный центр имени академика Н.П. Бочкова», главный внештатный специалист по медицинской генетике Минздрава России в Дальневосточном федеральном округе, Российская Федерация;Глотов Андрей Сергеевич, д.б.н., заведующий отделом геномной медицины им. В.С. Баранова ФГБНУ «Научно-исследовательский институт акушерства, гинекологии и репродуктологии имени Д.О. Отта», Российская Федерация; Гузева Валентина Ивановна, проф., д.м.н., главный внештатный детский специалист Минздрава России по неврологии, заслуженный деятель науки РФ, зав. кафедрой неврологии, нейрохирургии и медицинской генетики ФГБОУ ВО «Санкт-Петербургский государственный педиатрический медицинский университет» Минздрава России, член президиума Российского общества неврологов, Российская Федерация;Джаксыбаева Алтыншаш Хайруллаевна, заведующая кафедрой неврологии НАО «Медицинский университет Астана», д.м.н., главный внештатный детский невролог МЗ Республики Казахстан, Республика Казахстан;Жевнеронок Ирина Владимировна, к.м.н., доцент кафедры детской неврологии ГУО «Белорусская медицинская академия последипломного образования», главный специалист Министерства здравоохранения Республики Беларусь по наследственным нервно-мышечным заболеваниям у детей; руководитель Отделения наследственных нервно-мышечных заболеваний Республиканского научно-практического центра «Мать и дитя», Республика Беларусь;Какаулина Виктория Сергеевна, врач-невролог центра орфанных и других редких заболеваний ГУЗ города Москвы «Морозовская детская городская клиническая больница», Российская Федерация;Кузенкова Людмила Михайловна, проф., д.м.н., начальник Центра детской психоневрологии, заведующая отделением психоневрологии и психосоматической патологии ФГАУ НМИЦ здоровья детей; проф. кафедры педиатрии и детской ревматологии ФГАОУ ВО Первый МГМУ им. И.М. Сеченова Минздрава России, Российская Федерация;Михайлова Светлана Витальевна, профессор кафедры неврологии, нейрохирургии и медицинской генетики имени академика Бадаляна педиатрического факультета, профессор кафедры общей и медицинской генетики медико-биологического факультета, зав. отделением медицинской генетики Российской детской клинической больницы ФГАОУ ВО РНИМУ им. Н.И. Пирогова Мин­здрава России, Российская Федерация;Невмержицкая Кристина Сергеевна, к.м.н., ассистент кафедры нервных болезней ФГБОУ ВО УГМУ Минздрава России, заведующая отделением неврологии ГАУЗ СО ОДКБ, Российская Федерация;Первунина Татьяна Михайловна, д.м.н., директор института перинатологии и педиатрии ФГБУ НМИЦ им. В.А. Алмазова Минздрава России, Российская Федерация;Попович София Георгиевна, младший научный сотрудник отделения психоневрологии и психосоматической патологии ФГАУ НМИЦ здоровья детей Минздрава России, Российская Федерация;Соснина Ирина Брониславовна, главный врач СПб ГБУЗ «Консультативно-диагностический центр для детей», главный внештатный детский специалист невролог Комитета по здравоохранению Санкт-Петербурга, Российская Федерация;Увакина Евгения Владимировна, младший научный сотрудник отделения психоневрологии и психосоматической патологии ФГАУ НМИЦ здоровья детей Минздрава России, Российская Федерация;Щугарева Людмила Михайловна, д.м.н., профессор кафедры «Детская невропатология и нейрохирургия» СЗГМУ им. И.И. Мечникова Минздрава России, зав. отделением неврологии СПб ГБУЗ  «Детский городской многопрофильный клинический специализированный центр высоких медицинских технологий», Российская Федерация

Members of the working group:

Svetlana B. Artemyeva, MD, PhD, Head of the Neurological department of the Research Clinical Institute of Pediatrics named after Yu.E. Veltishchev; Russian Federation;Elena D. Belousova, MD, PhD, DSci, Professor, Head of the Department of psychoneurology and epileptology of pediatrics, Research Clinical Institute of Pediatrics named after Yu.E. Veltishchev, Russian Federation;Dmitry V. Vlodavets, MD, PhD, President of the Association of Pediatric Neurologists in the field of myology NeoMyo, Head of the Russian Children’s Neuromuscular Center at the Research Clinical Institute of Pediatrics and Pediatric Surgery named after Yu. E. Veltishchev; leading researcher, Department of psychoneurology and epileptology, Research Clinical Institute of Pediatrics and Pediatric Surgery named after Yu.E. Veltishchev; Associate Professor of the Department of neurology, neurosurgery and medical genetics named after L.O. Badalyan, Faculty of pediatrics, Russian National Research Medical University named after N.I. Pirogov, Russian Federation;Sergey V. Voronin, MD, PhD, chief physician of the Medical Genetic Research Center named after N.P. Bochkov, сhief freelance specialist in medical genetics of the Ministry of Health of Russia in the Far Eastern Federal District, Russian Federation; Andrey S. Glotov, MD, PhD, DSci., Head of the Department of genomic medicine named after V.S. Baranov of the Research Institute of Obstetrics, Gynecology and Reproductology named after D.O. Ott, Russian Federation;Valentina I. Guzeva, MD, PhD, DSci., Prof., chief freelance children’s specialist of the Russian Ministry of Health in Neurology, Honored Scientist of the Russian Federation, Head of the Department of neurology, neurosurgery and medical genetics, St. Petersburg State Pediatric Medical University, member of the Presidium of the Russian Society of Neurologists, Russian Federation;Altynshash K. Jaxybayeva, MD, PhD, DSci., Head of the Department of neurology, Astana Medical University, chief freelance pediatric neurologist of the Ministry of Health of the Republic of Kazakhstan, Republic of Kazakhstan;Irina V, Zhevneronok, MD, PhD, Associate Professor of the Department of pediatric neurology of the Belarusian Medical Academy of Postgraduate Education, chief specialist of the Ministry of Health of the Republic of Belarus on hereditary neuromuscular diseases in children; Head of the Department of hereditary neuromuscular diseases of the Republican Scientific and Practical Center “Mother and Child”, Republic of Belarus; Viktoria S. Kakaulina, neurologist, Center for Orphan and Other Rare Diseases, Morozov Children’s Municipal Clinical Hospital, Russian Federation;Lyudmila M. Kuzenkova, MD, PhD, DSci., Prof., Head of the Center for Child Psychoneurology, Head of the Department of Psychoneurology and Psychosomatic Pathology of the National Medical Research Center for Children’s Health; prof. of the Department of pediatrics and pediatric rheumatology of the Sechenov First Moscow State Medical University, Russian Federation;Svetlana V. Mikhailova, MD, PhD, DSci., Professor of the Department of neurology, neurosurgery and medical genetics named after Badalyan, Faculty of Pediatrics, Professor of the Department of general and medical genetics, Faculty of Medicine and Biology, Head of the Department of medical genetics of the Russian Children’s Clinical Hospital of the N.I. Pirogov Russian National Research Medical University, Russian Federation;Kristina S. Nevmerzhitskaya, MD, PhD, Assistant of the Department of nervous diseases, Ural State Medical University, Head of the Department of neurology, Sverdlovsk Region Clinical Hospital, Russian Federation;Tatyana M. Pervunina, MD, PhD, DSci., Director of the Institute of Perinatology and Pediatrics named after V.A. Almazov, Russian Federation;Sofia G. Popovich, junior researcher, Department of psychoneurology and psychosomatic pathology, National Medical Research Center for Children’s Health, Russian Federation;Irina B. Sosnina, chief physician of the St. Petersburg Consultative and Diagnostic Center for Children, chief freelance children’s specialist neurologist of the Committee on Health of St. Petersburg, Russian Federation;Eugeniya V. Uvakina, junior researcher, Department of psychoneurology and psychosomatic pathology, National Medical Research Center for Children’s Health, Russian Federation;Lyudmila M. Shchugareva, MD, PhD, DSci., Professor of the Department of pediatric neuropathology and neurosurgery, North-Western State Medical University. I.I. Mechnikov, head of the Department of neurology, St. Petersburg Children’s City Multidisciplinary Clinical Specialized Center for High Medical Technologies, Russian Federation

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The authors declare that there are no conflicts of interest present.