为了获得系统性红斑狼研究的最小核心数据集,
Stephen McDonald1,2, Jialin Teng1,3, Chengde Yang4
1NIHR Manchester Biomedical Research Centre, Manchester Foundation Trust, Manchester Royal Infirmary Kellgren Centre for Rheumatology, Manchester, UK.
Lupus science & medicine
|September 23, 2025
概括
研究人员在系统性狼发疹 (SLE) 研究中确定了常见的收集变量,以创建最小的核心数据集. 这旨在标准化数据收集,以便在未来对SLE进行比较研究.
科学领域:
- 类风湿病学 类风湿病学
- 自免疫性疾病 自免疫性疾病
- 临床研究 临床研究
背景情况:
- 系统性红斑狼 (SLE) 是一种复杂的自身免疫性疾病,呈现异质.
- 在SLE研究中不一致的数据收集阻碍了比较分析和协作.
- 建立一个标准化的数据集对于推动SLE研究至关重要.
研究的目的:
- 为了确定全球SLE临床研究人员通常收集的变量.
- 为未来的SLE研究建立一个最小核心数据集的基础.
- 为了提高数据的可比性,并促进多中心的SLE研究.
主要方法:
- 2020年向国际SLE研究中心 (包括SLICC成员和中国研究中心) 分发了一份问卷.
- 该调查包括26个关于常规收集的研究数据的问题.
- 至少75%的受访者收集的变量被优先考虑为核心数据集.
主要成果:
- 经常收集社会人口统计,SLE特定数据 (例如ACR 1997标准,SLEDAI-2K),治疗细节和补充水平 (C3 / C4) (≥75%).
- 其他项目,如SLICC 2012标准和SLICC/ACR损害指数,由50-75%的受访者收集.
- 不到50%的受访者收集了新的标准 (例如,EULAR/ACR 2019) 或特定的疫苗状态.
结论:
- 该研究确定了全球SLE队列中经常收集的变量,为最小的核心数据集提供了基础.
- 定义的进一步细化和标准化是必要的,以最终确定用于SLE研究的广泛适用的最小核心数据集.
- 该倡议旨在提高全球SLE数据的一致性和可比性.
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