临床试验数据协调和分享NHLBI生物数据催化剂 (BDC) 的最佳实践从CONNECTS网络COVID-19研究中学到的知识
Jeran K Stratford1, Huaqin Helen Pan1, Alex Mainor2
1RTI International, Research Triangle Park, NC, USA.
Journal of clinical and translational science
|May 19, 2025
概括
分享COVID-19临床试验数据需要解决隐私和协调挑战. 标准化格式和强大的治理确保FAIR数据加速研究和协作.
科学领域:
- 生物医学信息学 生物医学信息学
- 数据科学数据科学数据科学
- 临床研究 临床研究
背景情况:
- 合作共享数据对于COVID-19研究至关重要.
- 负责任的数据共享面临着隐私,质量和协调等挑战.
- 国家心肺和血液研究所 (NHLBI) 寻求分享其COVID-19研究数据.
研究的目的:
- 探索从分享NHLBI COVID-19临床试验和队列研究数据集中吸取的经验教训.
- 专注于协调研究数据集的挑战和成功.
- 促进 FAIR 数据 (可查找,可访问,可互操作,可重复使用) 的原则.
主要方法:
- 利用NHLBI生物数据催化剂 (BDC) 生态系统进行数据共享.
- 解决数据隐私,保密性,链接,质量和协调问题.
- 实施标准化数据格式,共同的数据元素和数据治理.
主要成果:
- 成功协调了来自5项临床试验和13项队列研究的数据集.
- 开发全面和可互操作的数据集.
- 确定有效的数据共享和治理的关键策略.
结论:
- 标准化格式,共同的数据元素和强有力的治理对于数据共享至关重要.
- 这些努力使下游数据可用于分析和合作.
- 概述的原则可以促进研究中的协作和高效的数据共享.
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