支持系统性红斑狼的临床护理和转化和观察研究的核心数据集
Johanna Mucke1, George Bertsias2, Martin Aringer3
1Ruhr-Universität Bochum, Germany; Rheumazentrum Ruhrgebiet, Herne, Germany; Department of Rheumatology, Heinrich-Heine University, Duesseldorf, Germany.
Annals of the rheumatic diseases
|August 21, 2025
概括
一个欧洲工作组确定了系统性红斑狼 (SLE) 护理和研究的核心数据集. 这种标准化的方法旨在改善患者的治疗结果,
科学领域:
- 关节病学
- 临床研究
- 数据标准化
背景情况:
- 标准化文档对于改善系统性红斑狼 (SLE) 的临床和多中心研究结果至关重要.
- 一个欧洲风湿病学协会联盟 (EULAR) 工作组被召集来解决这个问题.
研究的目的:
- 确定在临床实践中全面照顾SLE患者的一组基本项目.
- 建立SLE转化和观察研究的重要元素的扩展.
主要方法:
- 一个多学科的EULAR工作组采用了多步骤的方法.
- 这包括了四轮的Delphi调查和与来自14个国家的25个利益相关者进行面对面的会议.
主要成果:
- 最初的99项清单被改进为73项临床核心数据集.
- 还确定了8项研究扩展项目,涵盖了各种领域,包括疾病活动,损伤,并发症和患者报告的结果.
结论:
- 开发的临床核心数据集和研究扩展将加强SLE患者的护理和合作研究.
- 这种标准化有助于比较数据集,支持全球SLE数据空间,并促进SLE个性化医疗.
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