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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">rsp</journal-id><journal-title-group><journal-title xml:lang="ru">Научно-практическая ревматология</journal-title><trans-title-group xml:lang="en"><trans-title>Rheumatology Science and Practice</trans-title></trans-title-group></journal-title-group><issn pub-type="ppub">1995-4484</issn><issn pub-type="epub">1995-4492</issn><publisher><publisher-name>IMA-PRESS, LLC</publisher-name></publisher></journal-meta><article-meta><article-id pub-id-type="doi">10.14412/1995-4484-2016-499-507</article-id><article-id custom-type="elpub" pub-id-type="custom">rsp-2289</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>ПЕРЕДОВАЯ</subject></subj-group><subj-group subj-group-type="section-heading" xml:lang="en"><subject>LEADING ARTICLE</subject></subj-group></article-categories><title-group><article-title>ЗНАЧЕНИЕ  НАЦИОНАЛЬНОГО  РЕГИСТРА  БОЛЬНЫХ АНЦА-АССОЦИИРОВАННЫМИ  СИСТЕМНЫМИ ВАСКУ ЛИТАМИ  КАК  ИННОВАЦИОННОГО ИНСТРУМЕНТА  ПЕРСОНИФИЦИРОВАННОЙ ИНДУКЦИОННОЙ  И  ПОДДЕРЖИВАЮЩЕЙ  ТЕРАПИИ</article-title><trans-title-group xml:lang="en"><trans-title>THE VALUE OF THE RUSSIAN NATIONAL REGISTRY OF PATIENTS WITH ANCA-ASSOCIATED SYSTEMIC VASCULITIS AS AN INNOVATIVE TOOL OF PERSONALIZED INDUCTION AND MAINTENANCE  THERAPY</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>Бекетова</surname><given-names>Т. В.</given-names></name><name name-style="western" xml:lang="en"><surname>Beketova</surname><given-names>T. V.</given-names></name></name-alternatives><bio xml:lang="ru"><p>Татьяна Валентиновна Бекетова.</p><p>Москва, Россия 115522 Москва, Каширское шоссе, 34А</p></bio><bio xml:lang="en"><p>Tatyana Beketova.</p><p>Moscow, Russia 34A, Kashirskoe Shosse, Moscow 115522</p></bio><email xlink:type="simple">TVBEKTVBEK@rambler.ru</email><xref ref-type="aff" rid="aff-1"/></contrib></contrib-group><aff-alternatives id="aff-1"><aff xml:lang="ru"><institution>Научно-исследовательский институт ревматологии имени В.А. Насоновой</institution><country>Россия</country></aff><aff xml:lang="en"><institution>V.A. Nasonova Research Institute of Rheumatology</institution><country>Russian Federation</country></aff></aff-alternatives><pub-date pub-type="collection"><year>2016</year></pub-date><pub-date pub-type="epub"><day>08</day><month>12</month><year>2016</year></pub-date><volume>54</volume><issue>5</issue><fpage>499</fpage><lpage>507</lpage><permissions><copyright-statement>Copyright &amp;#x00A9; Бекетова Т.В., 2016</copyright-statement><copyright-year>2016</copyright-year><copyright-holder xml:lang="ru">Бекетова Т.В.</copyright-holder><copyright-holder xml:lang="en">Beketova T.V.</copyright-holder><license xml:lang="ru" license-type="creative-commons-attribution" xlink:href="https://creativecommons.org/licenses/by/4.0/" xlink:type="simple"><license-p>Данная работа распространяется под лицензией Creative Commons Attribution 4.0.</license-p></license><license xml:lang="en" 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://rsp.mediar-press.net/rsp/article/view/2289">https://rsp.mediar-press.net/rsp/article/view/2289</self-uri><abstract><p>Системные васкулиты,  ассоциированные с антинейтрофильными цитоплазматическими антителами (АНЦА-СВ), характеризуются  полиорганным поражением, гетерогенностью клинико-иммунологических форм,  разнообразием проявлений и на всех этапах требуют качественного взаимодействия между пациентом и врачом. Основой  успешной  терапии является  рациональное и персонифицированное поддержание тонкого баланса между применением научно обоснованного протокола  лечения,  достаточного для стойкого  подавления активности АНЦА-СВ,  и одновременным сдерживанием риска осложнений лечения.</p><p>В ответ на возросшую потребность  в совершенствовании подходов к ведению пациентов с АНЦА-СВ в ФГБНУ  НИИР имени В.А. Насоновой разработан  Национальный регистр больных АНЦА-СВ,  представляющий собой регулярно обновляемую  электронную базу динамического мониторинга больных, который  следует рассматривать как инновационный инструмент  персонифицированной индукционной и поддерживающей терапии,  соответствующий современной концепции «Лечение до достижения цели» (TreattoTarget). Основной  задачей регистра является  стабильное воспроизведение целей терапии АНЦА-СВ,  включая поддержание устойчивой ремиссии, снижение  частоты неблагоприятных реакций  на лечение,  контроль коморбидной патологии, достижение  высокого качества жизни. Дальнейшее развитие Национального регистра больных АНЦА-СВ как федеральной программы  может играть ключевую роль в повышении эффективности здравоохранения больных с редкими  и тяжелыми  заболеваниями, способствовать развитию  информационных и телекоммуникационных медицинских технологий  для обеспечения пациентам с АНЦА-СВ возможности неотложной консультативной и лечебной помощи  в экспертных  центрах, преемственности на разных этапах лечения,  уменьшению фармакоэкономических затрат.</p></abstract><trans-abstract xml:lang="en"><p>Antineutrophil  cytoplasmic antibody-associated systemic vasculitides (ANCA-SV) are characterized  by multiple organ failure, clinical and immunological heterogeneity,  and a variety of manifestations and require a high-quality interaction between the patient and the physician at all stages. Rational and personalized maintenance of a delicate balance between the use of an evidence-based  treatment protocol,  which is sufficient to secure sustainable suppression of the activity of ANCA-SV, and the simultaneous containment of the risk of treatment adverse events are the mainstay for successful therapy.</p><p>In response to the increased need for improved approaches to managing patients with ANCA-SV, the V.A. Nasonova Research Institute of Rheumatology has elaborated a National  Registry of patients with ANCA-SV, which is a regularly updated electronic database for patient follow-up and should be regarded as an innovative personalized induction and maintenance therapy tool that corresponds with the current treat-to-target concept. The main objective of the registry is to permanently  reproduce the goals of therapy for ANCA-SV, as well as to maintain  a sustainable remission, to reduce the incidence of treatment adverse events, to monitor comorbidity,  and to achieve a high quality of life. Further  development of the Russian National  Registry of patients with ANCA-SV as a federal program may play a key role in enhancing  the effectiveness of health care for patients with rare and severe diseases, contribute to the development of information  and telecommunication medical technologies for the provision of ANCA-SV patients with emergency counseling and medical assistance at the expert centers and for that of continuity at different treatment stages, to a reduction  in pharmacoeconomic expenses.</p></trans-abstract><kwd-group xml:lang="ru"><kwd>системный васкулит</kwd><kwd>антинейтрофильные цитоплазматические антитела</kwd><kwd>Национальный регистр больных АНЦА-ассоциированными системными васкулитами</kwd><kwd>динамическое наблюдение</kwd><kwd>«Лечение до достижения цели»</kwd></kwd-group><kwd-group xml:lang="en"><kwd>systemic vasculitis</kwd><kwd>antineutrophil cytoplasmic antibodies</kwd><kwd>Russian National  Registry of patients with ANCA-associated  systemic vasculitides</kwd><kwd>follow-up</kwd><kwd>treatment-to-target</kwd></kwd-group></article-meta></front><back><ref-list><title>References</title><ref id="cit1"><label>1</label><citation-alternatives><mixed-citation xml:lang="ru">Basu N, Watts R, Bajema I, et al. 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