关于先天性多发性关节炎的共同数据元素:一个国际框架
Shahrzad Nematollahi1,2, Klaus Dieterich3, Isabel Filges4
1School of Physical and Occupational Therapy, McGill University, Montreal, Canada.
Developmental medicine and child neurology
|March 16, 2024
概括
为了帮助国际研究,确定了对先天性多发性关节炎 (AMC) 的标准化共同数据元素 (CDE). 这些CDE将改善数据收集和跨多站点研究的协作.
科学领域:
- 医学研究 医学研究
- 遗传学 是一个遗传学.
- 临床信息学 临床信息学
背景情况:
- 由于缺乏标准化的数据收集,关节结症多重先天性 (AMC) 研究受到阻碍.
- 多站点和国际研究需要共同的数据元素 (CDE) 来进行有效的数据聚合和分析.
研究的目的:
- 建立基于共识的,标准化的常见数据元素 (CDE) 对于多发性先天性关节炎 (AMC).
- 促进AMC多站点研究和国际临床研究.
主要方法:
- 一种混合方法的方法,涉及焦点小组讨论和三轮修改后的Delphi调查.
- 在来自11个国家的45名临床专家和有实践经验的个人之间达成共识.
- 利用双层评级表来达成对CDE的共识.
主要成果:
- 为AMC开发了321个数据元素和19个标准化措施,涵盖胎儿发育到成年.
- 使用人类现象型本体学映射了AMC的表型特征.
- 确定了通用治理,操作协议和可持续性计划作为促进者;有限的数据共享能力和信息基础设施作为障碍.
结论:
- 使用CDE进行系统的数据收集将使对AMC病因学,流行病学和基因型-表型相关性进行标准化调查.
- 拟议的CDE将促进国际合作,加强大规模研究,并促进知识翻译.
- 实施需要解决诸如电子基础设施和数据库术语差异等障碍.
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