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APS 行动--抗磷脂综合征临床试验和国际网络联盟。

APS ACTION--AntiPhospholipid Syndrome Alliance For Clinical Trials and InternatiOnal Networking.

机构信息

Barbara Volcker Center for Women and Rheumatic Diseases, New York, New York, USA.

出版信息

Lupus. 2012 Jun;21(7):695-8. doi: 10.1177/0961203312437810.

Abstract

AntiPhospholipid Syndrome Alliance For Clinical Trials and InternatiOnal Networking (APS ACTION) is the first-ever international research network that has been created specifically to design and conduct well-designed, large-scale, multi-center clinical trials in persistently antiphospholipid antibody (aPL)-positive patients. The founding principle of the APS ACTION is that it is an internationally collaborative effort, open to qualified investigators across the globe who are committed to furthering our understanding of APS and its management. Due to the hard work and collaborative spirit of APS ACTION members, in early 2012, APS ACTION launched two important collaborative international projects: 1) a randomized controlled trial of hydroxychloroquine in the primary thrombosis prevention of persistently aPL-positive but thrombosis-free patients without other systemic autoimmune diseases; and 2) a web-based registry of aPL-positive patients with or without systemic autoimmune diseases, which will also include annual blood collection for aPL-testing and future basic science studies. In the end, we hope to find better treatments for antiphospholipid syndrome, which is a leading cause of thrombosis, pregnancy morbidity and other life-altering consequences, and to heighten awareness about this life-threatening, autoimmune condition.

摘要

抗磷脂综合征联盟临床试验和国际合作组织(APS ACTION)是首个专门为设计和进行大规模、多中心临床试验而创建的国际研究网络,这些试验针对的是持续存在抗磷脂抗体(aPL)阳性的患者。APS ACTION 的创立原则是,它是一项国际合作努力,向全球合格的研究人员开放,这些研究人员致力于深入了解抗磷脂综合征及其管理。由于 APS ACTION 成员的辛勤工作和合作精神,在 2012 年初,APS ACTION 启动了两个重要的合作国际项目:1)羟氯喹在无其他系统性自身免疫性疾病的持续 aPL 阳性但无血栓形成的患者中预防原发性血栓形成的随机对照试验;2)一个基于网络的 aPL 阳性患者登记处,无论是否患有系统性自身免疫性疾病,该登记处还将包括每年采集 aPL 检测的血液样本以及未来的基础科学研究。最终,我们希望找到更好的治疗方法来治疗抗磷脂综合征,这种疾病是血栓形成、妊娠发病率和其他改变生活的后果的主要原因,并提高对这种危及生命的自身免疫性疾病的认识。

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本文引用的文献

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