多发性硬化大数据网络:一个国际注册研究网络
Anna Glaser1, Helmut Butzkueven2, Anneke van der Walt3
1Department of Clinical Neuroscience, Karolinska Institute, Stockholm, Sweden.
Journal of neurology
|April 1, 2024
概括
大型多发性硬化症数据 (BMSD) 网络通过汇集国际注册表数据,使协作实体证据研究成为可能. BMSD克服了数据共享的挑战,以推进多发性硬化症 (MS) 研究.
科学领域:
- 神经学 神经学
- 数据科学数据科学数据科学
- 公共卫生 公共卫生
背景情况:
- 2014年建立的多发性硬化症大数据 (BMSD) 网络集成了来自多个国家的多发性硬化症 (MS) 注册表和国际MSBase注册表.
- 在数据共享方面,BMSD成功应对了道德,法律,技术和治理方面的挑战,通过三篇关于聚合数据集的科学出版物展示了其协作框架.
研究的目的:
- 为在多发性硬化症 (MS) 中进行协作实践证据 (RWE) 研究建立一个强大的框架.
- 促进独立成员国登记处数据的联合分析.
- 在MS领域推进RWE的产生和利用.
主要方法:
- 联合数据分析程序是为了克服独立运行的注册表之间的数据共享挑战而开发的.
- 为项目特定的数据模型开发一个统一的核心数据模型,使得尽管平台不同,但能够进行联合分析.
- 在不同注册表中收集不良事件数据的共识驱动的修改,展示了协调的发展.
主要成果:
- 通过聚合数据集分析,成功证明了协作设计的概念.
- 通过共识决策协调数据收集修改的能力.
- 建立了联合数据分析的程序,以实现联合研究.
结论:
- BMSD正在积极寻求欧洲药物管理局 (EMA) 资格进行许可后安全性研究 (PASS) 和疗效研究 (PAES).
- 该网络旨在为推进多发性硬化症的真实世界证据研究做出重大贡献.
- BMSD的基础设施和协作方法使其成为未来多发性硬化症研究的关键参与者.
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