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International Severe Asthma Registry: Mission Statement
Chest ( IF 9.5 ) Pub Date : 2020-04-01 , DOI: 10.1016/j.chest.2019.10.051
G. Walter Canonica , Marianna Alacqua , Alan Altraja , Vibeke Backer , Elisabeth Bel , Leif Bjermer , Unnur Bjornsdottir , Arnaud Bourdin , Guy G. Brusselle , George C. Christoff , Borja G. Cosio , Richard W. Costello , J. Mark FitzGerald , Peter G. Gibson , Liam G. Heaney , Enrico Heffler , Mark Hew , Takashi Iwanaga , Rupert C. Jones , Mariko Koh Siyue , Chin Kook Rhee , Sverre Lehmann , Lauri A. Lehtimäki , Dora Ludviksdottir , Anke-Hilse Maitland-van der Zee , Andrew N. Menzies-Gow , Nikolaos G. Papadopoulos , Vicente Plaza , Luis Perez de Llano , Matthew Peters , Celeste M. Porsbjerg , Mohsen Sadatsafavi , You Sook Cho , Yuji Tohda , Trung N. Tran , Eileen Wang , James Zangrilli , Lakmini Bulathsinhala , Victoria A. Carter , Isha Chaudhry , Neva Eleangovan , Naeimeh Hosseini , Thao L. Le , Ruth B. Murray , Chris A. Price , David B. Price

Regional and/or national severe asthma registries provide valuable country-specific information. However, they are often limited in scope within the broader definitions of severe asthma, have insufficient statistical power to answer many research questions, lack intra-operability to share lessons learned, and have fundamental differences in data collected, making cross comparisons difficult. What is missing is a worldwide registry which brings all severe asthma data together in a cohesive way, under a single umbrella, based on standardized data collection protocols, permitting data to be shared seamlessly. The International Severe Asthma Registry (ISAR; http://isaregistries.org/) is the first global adult severe asthma registry. It is a joint initiative where national registries (both newly created and pre-existing) retain ownership of their own data but open their borders and share data with ISAR for ethically approved research purposes. Its strength comes from collection of patient level, anonymous, longitudinal, real-life, standardized, high-quality data (using a core set of variables) from countries across the world, combined with organizational structure, database experience, inclusivity/openness, and clinical, academic, and database expertise. This gives ISAR sufficient statistical power to answer important research questions, sufficient data standardization to compare across countries and regions, and the structure and expertise necessary to ensure its continuance as well as the scientific integrity and clinical applicability of its research. ISAR offers a unique opportunity to implement existing knowledge, generate new knowledge, and identify the unknown, therefore promoting new research. The aim of this commentary is to fully describe how ISAR may improve our understanding of severe asthma.

中文翻译:

国际严重哮喘登记处:使命宣言

区域和/或国家重度哮喘登记处提供宝贵的国家特定信息。然而,它们通常在严重哮喘的更广泛定义范围内受到限制,没有足够的统计能力来回答许多研究问题,缺乏分享经验教训的内部操作性,并且收集的数据存在根本差异,使得交叉比较变得困难。缺少的是一个全球注册,它以统一的方式将所有严重的哮喘数据汇集到一个单一的保护伞下,基于标准化的数据收集协议,允许数据无缝共享。国际严重哮喘登记处 (ISAR; http://isaregistries.org/) 是第一个全球成人严重哮喘登记处。这是一项联合倡议,国家登记处(新创建的和预先存在的)保留对自己数据的所有权,但开放边界并与 ISAR 共享数据以用于道德批准的研究目的。其优势来自于收集来自世界各国的患者级别、匿名、纵向、真实、标准化、高质量的数据(使用一组核心变量),并结合组织结构、数据库经验、包容性/开放性和临床、学术和数据库专业知识。这为 ISAR 提供了足够的统计能力来回答重要的研究问题、足够的数据标准化以进行跨国家和地区的比较,以及确保其连续性及其研究的科学完整性和临床适用性所需的结构和专业知识。ISAR 提供了一个独特的机会来实施现有知识、产生新知识和识别未知,从而促进新的研究。本评论的目的是全面描述 ISAR 如何提高我们对严重哮喘的理解。
更新日期:2020-04-01
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