在OMERACT系统性红斑狼领域进行了调查
Wils Nielsen1, Vibeke Strand2, Lee Simon3
1Institute of Medical Science, University of Toronto, Toronto, Canada; Schroeder Arthritis Institute, Krembil Research Institute, University Health Network, Toronto, Canada; University of Toronto Lupus Clinic, Centre for Prognosis Studies in Rheumatic Diseases, Toronto Western Hospital, Toronto, ON, Canada.
Seminars in arthritis and rheumatism
|August 6, 2024
概括
更新系统性红斑狼 (SLE) 核心结果集 (COS) 是至关重要的. 患者和合作者优先考虑不同的领域,强调在制定全面的SLE COS时需要两种视角.
科学领域:
- 类风湿病学 类风湿病学
- 患者报告的结果
- 临床试验方法论 临床试验方法论
背景情况:
- 现有的系统性红斑狼 (SLE) 核心结果集 (COS) 于1998年建立.
- 自从它的发展以来,许多新的SLE领域和结果措施已经出现.
- 更新是必要的,以反映目前对SLE的理解和研究.
研究的目的:
- 为更新的SLE COS.评估现有的候选域名.
- 识别和生成用于SLE结果评估的新型候选域.
- 让SLE患者和合作者参与COS开发过程.
主要方法:
- 一项调查是由OMERACT SLE工作组指导委员会开发的.
- 邀请SLE患者和OMERACT SLE工作组的合作者参加.
- 调查是在2022年8月至2023年2月期间进行的.
主要成果:
- 175名受邀患者中有100名和178名合作者中有145名完成了调查.
- 患者优先考虑生活影响领域,而合作者专注于临床领域.
- 这两个小组都建议除了1998年SLE COS和研究议程之外的其他领域.
结论:
- 患者和合作者的优先事项不同,因此需要将两种视角纳入整体SLE评估中.
- 该研究确定了包含高度一致的领域,需要进一步澄清的领域,以及需要考虑的新领域.
- 这项研究对于更新SLE COS至关重要,以更好地捕捉疾病的多面性质.
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