数据可发现性和研究可用于观察性研究的元数据 (MINERVA):在欧洲开发元数据列表和目录的开发和试点
Romin Pajouheshnia1,2, Rosa Gini3, Lia Gutierrez2
1Division of Pharmacoepidemiology and Clinical Pharmacology, Utrecht University, Utrecht, The Netherlands.
Pharmacoepidemiology and drug safety
|August 15, 2024
概括
MINERVA项目开发了一份元数据目录,以提高现实世界数据源的可发现性和研究可复制性在欧洲. 这一倡议建立了一个最终的元数据列表和一个原型目录,帮助数据访问合作伙伴填写基本信息.
科学领域:
- 医疗信息学 医疗信息学
- 数据管理数据管理
- 观察性研究 观察性研究
背景情况:
- 现实世界数据源 (RWDS) 对研究至关重要,但往往缺乏可发现性和标准化.
- 确保数据可发现性和研究可复制性对于推进医学研究至关重要.
研究的目的:
- 定义和试点对现实世界数据源进行元数据目录,以提高数据的可发现性和研究可重复性.
- 支持研究人员在整个研究生命周期中导航和利用RWDS.
主要方法:
- 通过文献审查,采访,调查和研讨会开发了一个元数据列表.
- 使用MOLGENIS软件创建了一个原型目录,遵循FAIR原则.
- 与15个欧洲数据访问合作伙伴 (DAP) 进行了试点元数据收集.
主要成果:
- 在六个领域定义了442个元数据变量:机构,数据库,数据源,研究,网络和共同数据模型 (CDM).
- 成功填充了原型目录的元数据来自26个机构和多个数据源,包括医院和药房记录.
- 从符合不同CDM的三个数据源中提取并输入定量元数据.
结论:
- 完成了全面的元数据列表,并成功填写了原型目录.
- 开发了一份良好实践指南,以促进元数据目录的实施.
- 强调了建立和维护RWDS元数据目录所需的大量努力,以支持欧洲研究基础设施.
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