Merkel Peter A, Aydin Sibel Z, Boers Maarten, Cornell Christina, Direskeneli Haner, Gebhart Don, Hatemi Gulen, Luqmani Raashid, Matteson Eric L, Milman Nataliya, Robson Joanna, Seo Philip, Tomasson Gunnar
From the Division of Rheumatology and Department of Epidemiology, University of Pennsylvania, Philadelphia, Pennsylvania, USA; Department of Rheumatology, Istanbul Medeniyet University, Istanbul, Goztepe Training and Research Hospital, Istanbul, Turkey; Department of Epidemiology and Biostatistics, VU University Medical Center; Amsterdam, The Netherlands; Department of Rheumatology, Marmara University School of Medicine, Istanbul, Turkey; Department of Otolaryngology, Ohio State University Medical Center, Columbus, Ohio, USA; Division of Rheumatology, Department of Internal Medicine, Cerrahpasa Medical School, Istanbul University, Istanbul, Turkey; Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences, University of Oxford, Oxford, UK; Division of Rheumatology, and Division of Epidemiology, Mayo Clinic College of Medicine, Rochester, Minnesota, USA; Division of Rheumatology, University of Ottawa, Ottawa, Ontario, Canada; Division of Rheumatology, Johns Hopkins University, Baltimore, Maryland, USA; University of Iceland, Reykjavik, Iceland.
J Rheumatol. 2014 Mar;41(3):593-8. doi: 10.3899/jrheum.131248. Epub 2014 Jan 15.
The conduct of randomized controlled trials for vasculitis, especially for the antineutrophil cytoplasmic antibody-associated vasculitides [AAV, granulomatosis with polyangiitis (Wegener's) and microscopic polyangiitis], has been greatly advanced by the development, use, and acceptance of validated outcome measures. Trials have subsequently provided the opportunity to validate and refine reliable, valid outcome measures for these multisystemic and relapsing rare diseases. The Outcome Measures in Rheumatology (OMERACT) Vasculitis Working Group was formed in 2004 to foster development of validated and widely accepted outcomes in vasculitis using data-driven analyses, a dedication to building consensus, and adherence to, and guidance by, the principles of the OMERACT approach. This work led to the endorsement by OMERACT of the core set of domains and associated outcome measures for AAV. Next steps for the study of existing outcome tools in AAV include better definition of response criteria through development of more data-driven weighting of the elements of activity and damage assessment. The Working Group is now also embarking on a series of linked projects to develop validated patient-reported outcomes for use in clinical research in vasculitis. Additionally, the Working Group is studying how current methods of disease assessment and plans for new outcomes can be informed by the conceptual framework of the International Classification of Function of the World Health Organization. The success of the Group's work in AAV has also led to a formal process for developing outcomes for the large vessel vasculitides (Takayasu arteritis and giant cell arteritis) and Behçet disease.
血管炎随机对照试验的开展,尤其是抗中性粒细胞胞浆抗体相关性血管炎(AAV,包括肉芽肿性多血管炎(韦格纳肉芽肿)和显微镜下多血管炎)的试验,因有效结局指标的开发、应用和认可而取得了巨大进展。随后的试验为验证和完善这些多系统复发性罕见疾病的可靠有效结局指标提供了机会。风湿病结局指标(OMERACT)血管炎工作组于2004年成立,旨在通过数据驱动分析、致力于达成共识以及遵循OMERACT方法的原则并接受其指导,促进血管炎领域有效且被广泛接受的结局指标的开发。这项工作促使OMERACT认可了AAV的核心领域集及相关结局指标。AAV现有结局工具研究的下一步包括通过对活动和损伤评估要素进行更多数据驱动的加权来更好地定义反应标准。该工作组目前还着手开展一系列相关项目,以开发经验证的患者报告结局指标,用于血管炎的临床研究。此外,该工作组正在研究世界卫生组织国际功能分类的概念框架如何为当前疾病评估方法和新结局指标计划提供参考。该工作组在AAV方面的工作取得成功,也促成了为大血管血管炎(高安动脉炎和巨细胞动脉炎)和白塞病制定结局指标的正式流程。