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<article article-type="research-article" dtd-version="1.3" xmlns:mml="http://www.w3.org/1998/Math/MathML" xmlns:xlink="http://www.w3.org/1999/xlink" xmlns:xsi="http://www.w3.org/2001/XMLSchema-instance" xml:lang="ru"><front><journal-meta><journal-id journal-id-type="publisher-id">neurojour</journal-id><journal-title-group><journal-title xml:lang="ru">Неврологический журнал имени Л.О. Бадаляна</journal-title><trans-title-group xml:lang="en"><trans-title>L.O. Badalyan Neurological Journal</trans-title></trans-title-group></journal-title-group><issn pub-type="ppub">2686-8997</issn><issn pub-type="epub">2712-794X</issn><publisher><publisher-name>ФГАУ «НМИЦ здоровья детей» Минздрава России</publisher-name></publisher></journal-meta><article-meta><article-id pub-id-type="doi">10.46563/2686-8997-2022-3-4-148-151</article-id><article-id custom-type="elpub" pub-id-type="custom">neurojour-75</article-id><article-categories><subj-group subj-group-type="heading"><subject>Research Article</subject></subj-group><subj-group subj-group-type="section-heading" xml:lang="ru"><subject>ИНФОРМАЦИОННЫЕ МАТЕРИАЛЫ</subject></subj-group><subj-group subj-group-type="section-heading" xml:lang="en"><subject>INFORMATIONAL MATERIALS</subject></subj-group></article-categories><title-group><article-title>Резолюция совета экспертов в отношении патогенетической терапии мышечной дистрофии Дюшенна у детей в неамбулаторной стадии заболевания с применением препарата аталурен</article-title><trans-title-group xml:lang="en"><trans-title>Expert council resolution on the use of pathogenetic therapy with Ataluren in patients with non-ambulatory Duchenne muscular dystrophy</trans-title></trans-title-group></title-group><contrib-group><contrib contrib-type="author" corresp="yes"><name-alternatives><name name-style="eastern" xml:lang="ru"><surname>Артемьева</surname><given-names>Светлана Брониславовна</given-names></name><name name-style="western" xml:lang="en"><surname>Artemyeva</surname><given-names>Svetlana B.</given-names></name></name-alternatives><bio xml:lang="ru"><p>К.м.н., зав. неврологическим отделением Научно-исследовательского клинического института педиатрии и детской хирургии имени академика Ю.Е. Вельтищева ФГАУО ВО «Российский национальный исследовательский медицинский университет имени Н.И. Пирогова» Минздрава России, Российская Федерация</p></bio><bio xml:lang="en"><p>MD, Ph.D., Head of the Neurological department of the Research Clinical Institute of Pediatrics and Pediatric Surgery named after Academician Yu.E. Veltischev of the Pirogov Russian National Research University (Russia)</p></bio><email xlink:type="simple">noemail@neicon.ru</email><xref ref-type="aff" rid="aff-1"/></contrib><contrib contrib-type="author" corresp="yes"><name-alternatives><name name-style="eastern" xml:lang="ru"><surname>Влодавец</surname><given-names>Дмитрий Владимирович</given-names></name><name name-style="western" xml:lang="en"><surname>Vlodavets</surname><given-names>Dmitry V.</given-names></name></name-alternatives><bio xml:lang="ru"><p>Доцент, к.м.н., руководитель Российского детского нервно-мышечного центра, ведущий научный сотрудник отдела психоневрологии и эпилептологии Научно-исследовательского клинического института педиатрии и детской хирургии имени академика Ю.Е. Вельтищева, доцент кафедры неврологии, нейрохирургии и медицинской генетики имени Л.О. Бадаляна педиатрического факультета ФГАУО ВО «Российский национальный исследовательский медицинский университет имени Н.И. Пирогова» Минздрава России, Российская Федерация</p></bio><bio xml:lang="en"><p>MD, Ph.D., Associated Professor, Head of the Russian Children’s Neuromuscular Center, leading researcher of the Department of psychoneurology and epileptology of the Research Clinical Institute of Pediatrics and Pediatric Surgery named after Academician Yu.E. Veltischev, Associate Professor of the Department of neurology, neurosurgery and medical genetics named after Academician L.O. Badalyan of the Pediatric Faculty of the Pirogov Russian National Research University (Russia)</p></bio><email xlink:type="simple">noemail@neicon.ru</email><xref ref-type="aff" rid="aff-2"/></contrib><contrib contrib-type="author" corresp="yes"><name-alternatives><name name-style="eastern" xml:lang="ru"><surname>Гузева</surname><given-names>Валентина Ивановна</given-names></name><name name-style="western" xml:lang="en"><surname>Guzeva</surname><given-names>Valentina I.</given-names></name></name-alternatives><bio xml:lang="ru"><p>Д.м.н., проф., главный внештатный детский специалист Минздрава России по неврологии, заслуженный деятель науки РФ, заведующая кафедрой неврологии, нейрохирургии и медицинской генетики ФГБОУ ВО «Санкт-Петербургский государственный педиатрический медицинский университет» Минздрава России; член президиума Российского общества неврологов, Российская Федерация</p></bio><bio xml:lang="en"><p>MD, Ph.D., DSci., Professor, Chief freelance children’s specialist of the Ministry of Health of the Russian Federation in Neurology, Honored Scientist of the Russian Federation, Head of the Department of neurology, neurosurgery and medical genetics of the St. Petersburg State Pediatric Medical University, Member of the Presidium of the Russian Society of Neurologists (Russia)</p></bio><email xlink:type="simple">noemail@neicon.ru</email><xref ref-type="aff" rid="aff-3"/></contrib><contrib contrib-type="author" corresp="yes"><name-alternatives><name name-style="eastern" xml:lang="ru"><surname>Джаксыбаева</surname><given-names>Алтыншаш Хайруллаевна</given-names></name><name name-style="western" xml:lang="en"><surname>Dzhaksybayeva</surname><given-names>Altynshash K.</given-names></name></name-alternatives><bio xml:lang="ru"><p>Д.м.н., проф., заведующая кафедрой неврологии НАО «Медицинский университет Астана»; главный детский внештатный невролог Республики Казахстан, Республика Казахстан</p></bio><bio xml:lang="en"><p>MD, Ph.D., DSci., Prof., Head of the Neurological department of Astana Medical University, the Chief Children’s Freelance Neurologist of the Republic of Kazakhstan (Kazakhstan)</p></bio><email xlink:type="simple">noemail@neicon.ru</email><xref ref-type="aff" rid="aff-4"/></contrib><contrib contrib-type="author" corresp="yes"><name-alternatives><name name-style="eastern" xml:lang="ru"><surname>Жевнеронок</surname><given-names>Ирина Владимировна</given-names></name><name name-style="western" xml:lang="en"><surname>Zhauniaronak</surname><given-names>Irina V.</given-names></name></name-alternatives><bio xml:lang="ru"><p>К.м.н., доцент кафедры детской неврологии ГУО «Белорусская медицинская академия последипломного образования»; главный специалист по нейромышечным заболеваниям Республики Беларусь, Республика Беларусь</p></bio><bio xml:lang="en"><p>MD, PhD, Associated Professor of the Department of pediatric neurology of the Belarusian Medical Academy of Postgraduate Education, Chief Specialist in Neuromuscular Diseases of the Republic of Belarus (Belarus);</p></bio><email xlink:type="simple">noemail@neicon.ru</email><xref ref-type="aff" rid="aff-5"/></contrib><contrib contrib-type="author" corresp="yes"><name-alternatives><name name-style="eastern" xml:lang="ru"><surname>Кузенкова</surname><given-names>Людмила Михайловна</given-names></name><name name-style="western" xml:lang="en"><surname>Kuzenkova</surname><given-names>Ludmila M.</given-names></name></name-alternatives><bio xml:lang="ru"><p>Д.м.н., проф., начальник Центра детской психоневрологии, профессор кафедры «Педиатрия и общественное здоровье» Института подготовки медицинских кадров ФГАУ «Национальный медицинский исследовательский центр здоровья детей» Минздрава России; профессор кафедры педиатрии и детской ревматологии Клинического института детского здоровья имени Н.Ф. Филатова ФГАОУ ВО «Первый Московский государственный медицинский университет имени И.М. Сеченова Минздрава России» (Сеченовский Университет), Российская Федерация</p></bio><bio xml:lang="en"><p>MD, Ph.D., DSci., Prof., Head of the Centre for Children’s Psychoneurology, Head of the Department of psychoneurology and psychosomatic pathology of the National Medical Research Centre for Children’s Health of the Ministry of Health of the Russian Federation, professor of the Department of pediatrics and pediatric rheumatology, Clinical Institute of Children’s Health named after N.F. Filatov  of the First Moscow State Medical University named after I.M. Sechenov of the Ministry of Health of Russia (Sechenov University (Russia)</p></bio><email xlink:type="simple">noemail@neicon.ru</email><xref ref-type="aff" rid="aff-6"/></contrib><contrib contrib-type="author" corresp="yes"><name-alternatives><name name-style="eastern" xml:lang="ru"><surname>Лепесова</surname><given-names>Маржан Махмутовна</given-names></name><name name-style="western" xml:lang="en"><surname>Lepessova</surname><given-names>Marzhan M.</given-names></name></name-alternatives><bio xml:lang="ru"><p>Д.м.н., проф., заведующая кафедрой неврологии НУО «Казахстанско-Российский медицинский университет»; президент Ассоциации детских неврологов Республики Казахстан, Республика Казахстан</p></bio><bio xml:lang="en"><p>MD, Ph.D., DSci., Prof., Head of the Department of Neurology of the Kazakh-Russian Medical University, President of the Association of Pediatric Neurologists of the Republic of Kazakhstan, Almaty (Kazakhstan)</p></bio><email xlink:type="simple">noemail@neicon.ru</email><xref ref-type="aff" rid="aff-7"/></contrib><contrib contrib-type="author" corresp="yes"><name-alternatives><name name-style="eastern" xml:lang="ru"><surname>Мырзалиева</surname><given-names>Бахыт Джусупжановна</given-names></name><name name-style="western" xml:lang="en"><surname>Myrzalieva</surname><given-names>Bakhyt D.</given-names></name></name-alternatives><bio xml:lang="ru"><p>Магистр медицинских наук, старший преподаватель кафедры неврологии НУО «Казахстанско-Российский медицинский университет»; координатор по нервно-мышечным заболеваниям при ГУ «Управление общественного здравоохранения города Алматы», Республика Казахстан</p></bio><bio xml:lang="en"><p>MD, Master of Medicine, Senior Lecturer, Department of neurology, Kazakh-Russian Medical University, Coordinator for Neuromuscular Diseases at the Public Health Department, Almaty (Kazakhstan)</p></bio><email xlink:type="simple">noemail@neicon.ru</email><xref ref-type="aff" rid="aff-8"/></contrib><contrib contrib-type="author" corresp="yes"><name-alternatives><name name-style="eastern" xml:lang="ru"><surname>Печатникова</surname><given-names>Наталья Леонидовна</given-names></name><name name-style="western" xml:lang="en"><surname>Pechatnikova</surname><given-names>Natalia L.</given-names></name></name-alternatives><bio xml:lang="ru"><p>Руководитель генетической службы ГБУЗ «Морозовская детская городская клиническая больница ДЗМ», Российская Федерация</p></bio><bio xml:lang="en"><p>MD, Head of the Orphan Center at the Morozov Clinical Hospital in Moscow (Russia)</p></bio><email xlink:type="simple">noemail@neicon.ru</email><xref ref-type="aff" rid="aff-9"/></contrib><contrib contrib-type="author" corresp="yes"><name-alternatives><name name-style="eastern" xml:lang="ru"><surname>Подклетнова</surname><given-names>Татьяна Владимировна</given-names></name><name name-style="western" xml:lang="en"><surname>Podkletnova</surname><given-names>Tatyana V.</given-names></name></name-alternatives><bio xml:lang="ru"><p>К.м.н., старший научный сотрудник лаборатории нервных болезней у детей ФГАУ «Национальный медицинский исследовательский центр здоровья детей» Минздрава России, Российская Федерация</p></bio><bio xml:lang="en"><p>MD, Ph.D., senior researcher of the Laboratory of nervous diseases in children of the National Medical Research Centre for Children’s Health of the Ministry of Health of the Russian Federation (Russia)</p></bio><email xlink:type="simple">noemail@neicon.ru</email><xref ref-type="aff" rid="aff-10"/></contrib><contrib contrib-type="author" corresp="yes"><name-alternatives><name name-style="eastern" xml:lang="ru"><surname>Суслов</surname><given-names>Василий Михайлович</given-names></name><name name-style="western" xml:lang="en"><surname>Suslov</surname><given-names>Vasily M.</given-names></name></name-alternatives><bio xml:lang="ru"><p>К.м.н., доцент кафедры реабилитологии факультета послевузовского и дополнительного профессионального образования ФГБОУ ВО «Санкт-Петербургский государственный педиатрический медицинский университет», Российская Федерация</p></bio><bio xml:lang="en"><p>MD, Ph.D., Associated Professor of the department of rehabilitology of the Faculty of postgraduate and additional postgraduate education of St. Petersburg State Pediatric Medical University (Russia)</p></bio><email xlink:type="simple">noemail@neicon.ru</email><xref ref-type="aff" rid="aff-11"/></contrib><contrib contrib-type="author" corresp="yes"><name-alternatives><name name-style="eastern" xml:lang="ru"><surname>Пелипенко</surname><given-names>Ирина Владимировна</given-names></name><name name-style="western" xml:lang="en"><surname>Pelipenko</surname><given-names>Irina V.</given-names></name></name-alternatives><bio xml:lang="ru"><p>Заведующая неврологическим отделением ОБУЗ «Областная детская клиническая больница» Комитета по здравоохранению Курской области; главный внештатный специалист, детский невролог Курской области, Российская Федерация</p></bio><bio xml:lang="en"><p>MD, Head of the Neurological department of the Regional Children’s Clinical Hospital of the Health Committee of the Kursk Region, Chief Freelance Specialist, Pediatric Neurologist of the Kursk Region (Russia)</p></bio><email xlink:type="simple">noemail@neicon.ru</email><xref ref-type="aff" rid="aff-12"/></contrib><contrib contrib-type="author" corresp="yes"><name-alternatives><name name-style="eastern" xml:lang="ru"><surname>Белло</surname><given-names>Лука</given-names></name><name name-style="western" xml:lang="en"><surname>Bello</surname><given-names>Luca</given-names></name></name-alternatives><bio xml:lang="ru"><p>MD, Ph.D., профессор, отделение детской неврологии университета Падовы, Италия</p></bio><bio xml:lang="en"><p>MD, Ph.D., Prof., Department of pediatric neurology, University of Padova (Italy)</p></bio><email xlink:type="simple">noemail@neicon.ru</email><xref ref-type="aff" rid="aff-13"/></contrib><contrib contrib-type="author" corresp="yes"><name-alternatives><name name-style="eastern" xml:lang="ru"><surname>Бутояну</surname><given-names>Никулина</given-names></name><name name-style="western" xml:lang="en"><surname>Butoianu</surname><given-names>Niculina</given-names></name></name-alternatives><bio xml:lang="ru"><p>MD, Ph.D., заведующая отделением детской неврологии Университета медицины и фармацевтики имени Карола Давила, Бухарест, Румыния</p></bio><bio xml:lang="en"><p>MD, Ph.D., Head of the Department of pediatric neurology of Carol Davila University of Medicine and Pharmacy, Bucharest (Romania)</p></bio><email xlink:type="simple">noemail@neicon.ru</email><xref ref-type="aff" rid="aff-14"/></contrib></contrib-group><aff-alternatives id="aff-1"><aff xml:lang="ru">ФГАУО ВО «Российский национальный исследовательский медицинский университет имени Н.И. Пирогова» Минздрава России<country>Россия</country></aff><aff xml:lang="en">Pirogov Russian National Research University<country>Russian Federation</country></aff></aff-alternatives><aff-alternatives id="aff-2"><aff xml:lang="ru">Российский детский нервно-мышечный центр; Научно-исследовательский клинический институт педиатрии и детской хирургии имени академика Ю.Е. Вельтищева; ФГАУО ВО «Российский национальный исследовательский медицинский университет имени Н.И. Пирогова» Минздрава России<country>Россия</country></aff><aff xml:lang="en">Russian Children’s Neuromuscular Center; Research Clinical Institute of Pediatrics and Pediatric Surgery named after Academician Yu.E. Veltischev; Pirogov Russian National Research University<country>Russian Federation</country></aff></aff-alternatives><aff-alternatives id="aff-3"><aff xml:lang="ru">ФГБОУ ВО «Санкт-Петербургский государственный педиатрический медицинский университет» Минздрава России; Российское общество неврологов<country>Россия</country></aff><aff xml:lang="en">St. Petersburg State Pediatric Medical University of the Ministry of Health of Russia; Russian Society of Neurologists<country>Russian Federation</country></aff></aff-alternatives><aff-alternatives id="aff-4"><aff xml:lang="ru">НАО «Медицинский университет Астана»<country>Россия</country></aff><aff xml:lang="en">Astana Medical University<country>Russian Federation</country></aff></aff-alternatives><aff-alternatives id="aff-5"><aff xml:lang="ru">ГУО «Белорусская медицинская академия последипломного образования»<country>Россия</country></aff><aff xml:lang="en">Belarusian Medical Academy of Postgraduate Education<country>Russian Federation</country></aff></aff-alternatives><aff-alternatives id="aff-6"><aff xml:lang="ru">Центр детской психоневрологии; ФГАУ «Национальный медицинский исследовательский центр здоровья детей» Минздрава России; Клинический институт детского здоровья имени Н.Ф. Филатова ФГАОУ ВО «Первый Московский государственный медицинский университет имени И.М. Сеченова Минздрава России» (Сеченовский Университет)<country>Россия</country></aff><aff xml:lang="en">Centre for Children’s Psychoneurology; National Medical Research Centre for Children’s Health of the Ministry of Health of the Russian Federation; Clinical Institute of Children’s Health named after N.F. Filatov of the First Moscow State Medical University named after I.M. Sechenov of the Ministry of Health of Russia (Sechenov University)<country>Russian Federation</country></aff></aff-alternatives><aff-alternatives id="aff-7"><aff xml:lang="ru">НУО «Казахстанско-Российский медицинский университет»; Ассоциации детских неврологов Республики Казахстан<country>Россия</country></aff><aff xml:lang="en">Kazakh-Russian Medical University; Associations of Pediatric Neurologists of the Republic of Kazakhstan<country>Russian Federation</country></aff></aff-alternatives><aff-alternatives id="aff-8"><aff xml:lang="ru">НУО «Казахстанско-Российский медицинский университет»; ГУ «Управление общественного здравоохранения города Алматы»<country>Россия</country></aff><aff xml:lang="en">Kazakh-Russian Medical University; Public Health Department<country>Russian Federation</country></aff></aff-alternatives><aff-alternatives id="aff-9"><aff xml:lang="ru">ГБУЗ «Морозовская детская городская клиническая больница ДЗМ»<country>Россия</country></aff><aff xml:lang="en">Orphan Center at the Morozov Clinical Hospital in Moscow<country>Russian Federation</country></aff></aff-alternatives><aff-alternatives id="aff-10"><aff xml:lang="ru">ФГАУ «Национальный медицинский исследовательский центр здоровья детей» Минздрава России<country>Россия</country></aff><aff xml:lang="en">National Medical Research Centre for Children’s Health of the Ministry of Health of the Russian Federation<country>Russian Federation</country></aff></aff-alternatives><aff-alternatives id="aff-11"><aff xml:lang="ru">ФГБОУ ВО «Санкт-Петербургский государственный педиатрический медицинский университет»<country>Россия</country></aff><aff xml:lang="en">St. Petersburg State Pediatric Medical University<country>Russian Federation</country></aff></aff-alternatives><aff-alternatives id="aff-12"><aff xml:lang="ru">ОБУЗ «Областная детская клиническая больница» Комитета по здравоохранению Курской области<country>Россия</country></aff><aff xml:lang="en">Regional Children’s Clinical Hospital of the Health Committee of the Kursk Region<country>Russian Federation</country></aff></aff-alternatives><aff-alternatives id="aff-13"><aff xml:lang="ru">Университет Падовы<country>Россия</country></aff><aff xml:lang="en">University of Padova<country>Russian Federation</country></aff></aff-alternatives><aff-alternatives id="aff-14"><aff xml:lang="ru">Университет медицины и фармацевтики имени Карола Давила<country>Россия</country></aff><aff xml:lang="en">Carol Davila University of Medicine and Pharmacy<country>Russian Federation</country></aff></aff-alternatives><pub-date pub-type="collection"><year>2022</year></pub-date><pub-date pub-type="epub"><day>03</day><month>02</month><year>2023</year></pub-date><volume>3</volume><issue>4</issue><fpage>148</fpage><lpage>151</lpage><permissions><copyright-statement>Copyright &amp;#x00A9; Артемьева С.Б., Влодавец Д.В., Гузева В.И., Джаксыбаева А.Х., Жевнеронок И.В., Кузенкова Л.М., Лепесова М.М., Мырзалиева Б.Д., Печатникова Н.Л., Подклетнова Т.В., Суслов В.М., Пелипенко И.В., Белло Л., Бутояну Н., 2023</copyright-statement><copyright-year>2023</copyright-year><copyright-holder xml:lang="ru">Артемьева С.Б., Влодавец Д.В., Гузева В.И., Джаксыбаева А.Х., Жевнеронок И.В., Кузенкова Л.М., Лепесова М.М., Мырзалиева Б.Д., Печатникова Н.Л., Подклетнова Т.В., Суслов В.М., Пелипенко И.В., Белло Л., Бутояну Н.</copyright-holder><copyright-holder xml:lang="en">Artemyeva S.B., Vlodavets D.V., Guzeva V.I., Dzhaksybayeva A.K., Zhauniaronak I.V., Kuzenkova L.M., Lepessova M.M., Myrzalieva B.D., Pechatnikova N.L., Podkletnova T.V., Suslov V.M., Pelipenko I.V., Bello L., Butoianu N.</copyright-holder><license license-type="creative-commons-attribution" xlink:href="https://creativecommons.org/licenses/by/4.0/" xlink:type="simple"><license-p>This work is licensed under a Creative Commons Attribution 4.0 License.</license-p></license></permissions><self-uri xlink:href="https://www.neuro-journal.ru/jour/article/view/75">https://www.neuro-journal.ru/jour/article/view/75</self-uri><abstract><p>Прогрессирующая мышечная дистрофия Дюшенна (МДД) — это редкое хроническое прогрессирующее наследственное Х-сцепленное рецессивное заболевание, вызванное мутациями в гене DMD [1–9].</p></abstract></article-meta></front><back><ref-list><title>References</title><ref id="cit1"><label>1</label><citation-alternatives><mixed-citation xml:lang="ru">Ebrahimi-Fakhari D., Dillmann U., Flotats-Bastardas M., Poryo M., Abdul-Khaliq H., Shamdeen M.G., et al. 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