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抗磷脂综合征临床试验与国际网络联盟(APS ACTION):5年进展报告。

AntiPhospholipid Syndrome Alliance for Clinical Trials and InternatiOnal Networking (APS ACTION): 5-Year Update.

作者信息

Barbhaiya Medha, Andrade Danieli, Erkan Doruk

机构信息

Division of Rheumatology, Immunology, and Allergy, Brigham and Women's Hospital, Harvard Medical School, Boston, MA, USA.

University of São Paulo, São Paulo, Brazil.

出版信息

Curr Rheumatol Rep. 2016 Oct;18(10):64. doi: 10.1007/s11926-016-0611-y.

Abstract

Antiphospholipid Syndrome Alliance for Clinical Trials and International Networking (APS ACTION) is the first-ever international network created to design and conduct large-scale, multicenter clinical trials and research in persistently antiphospholipid antibody (aPL)-positive patients. Since its inception in 2010, the APS ACTION has made important strides toward our goal of international research collaboration and data sharing. Through the dedication and hard work of 50 APS ACTION members, collaborative international projects are currently underway including a multicenter web-based registry and repository of aPL-positive patients, a randomized controlled clinical trial assessing the efficacy of hydroxychloroquine for primary thrombosis prevention in persistently aPL-positive but thrombosis-free patients, standardization of aPL testing through the use of core laboratories worldwide, identification of the limitations in the existing aPL/APS literature, and conducting observational research studies to further our understanding of the disease. Thus far, APS ACTION has held annual workshops and summits with the aim of facilitating international collaboration and developing initiatives to recruit young scholars to APS research. This paper describes updates related to the organization's structure, ongoing research efforts, and recent accomplishments and discusses future directions.

摘要

抗磷脂综合征临床试验与国际网络联盟(APS ACTION)是首个为设计和开展针对持续抗磷脂抗体(aPL)阳性患者的大规模多中心临床试验及研究而创建的国际网络。自2010年成立以来,APS ACTION在实现国际研究合作与数据共享的目标方面取得了重要进展。通过50名APS ACTION成员的奉献和努力,目前正在开展多项国际合作项目,包括一个基于网络的多中心aPL阳性患者注册库和资料库、一项评估羟氯喹对持续aPL阳性但无血栓形成患者预防原发性血栓疗效的随机对照临床试验、通过全球核心实验室实现aPL检测标准化、确定现有aPL/APS文献中的局限性,以及开展观察性研究以加深我们对该疾病的理解。到目前为止,APS ACTION已举办年度研讨会和峰会,旨在促进国际合作,并制定招募年轻学者参与APS研究的倡议。本文介绍了该组织的结构、正在进行的研究工作和近期成果的最新情况,并讨论了未来的发展方向。

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