阿尔茨海默病和相关痴呆症研究人员之间的数据共享实践和经验
Jalayne J Arias1, Karen E Nielsen2, Dragana Bolcic-Jankovic3
1Department of Health Policy & Behavioral Sciences, School of Public Health, Georgia State University, Atlanta, Georgia, USA.
Alzheimer's & dementia : the journal of the Alzheimer's Association
|January 23, 2026
概括
阿尔茨海默病和相关痴呆症 (ADRD) 研究人员积极分享数据,大多数请求都得到满足. 解决数据共享障碍可以加强合作,防止研究延迟.
科学领域:
- 神经科学是一个神经科学.
- 公共卫生 公共卫生
- 数据科学数据科学数据科学
背景情况:
- 数据共享对于阿尔茨海默病和相关痴呆症 (ADRD) 研究至关重要,提高了数据集的代表性,可重现性和严谨性.
- 对调查人员的数据共享实践和经验的有限理解阻碍了促进最佳数据共享.
- 研究人员参与数据共享对于推进ADRD研究和加速发现至关重要.
研究的目的:
- 调查美国阿尔茨海默病和相关痴呆症 (ADRD) 调查人员关于数据共享的当前做法和经验.
- 确定与ADRD研究人员之间数据共享相关的促进者和障碍.
- 为促进ADRD研究界更有效,更广泛地共享数据的战略提供信息.
主要方法:
- 在2016年至2019年期间接受美国国立卫生研究院 (NIH) 资助的美国ADRD研究人员进行了一项横截面调查.
- 该调查收集了调查人员参与数据共享的数据,包括启动和接收数据请求,履行率和感知后果.
- 对585名调查人员的答案进行了统计分析,回复率为64.5%.
主要成果:
- 大约62.9%的受访ADRD研究人员在过去五年中参与了数据共享.
- 大多数数据请求得到了及时的满足:61.8%的请求者在六个月内收到了所有数据,85.1%的收到请求的人完成了所有数据.
- 数据请求下降的常见原因包括现有的数据使用协议,机构审查委员会 (IRB) 的要求和资源限制. 分享的积极后果,如新的合作,比负面后果更频繁地报告.
结论:
- ADRD调查人员在数据共享实践中表现出令人鼓舞的参与.
- 虽然大多数数据共享请求都能成功实现,但解决数据使用协议,IRB协议和资源限制等障碍至关重要.
- 促进数据共享和减轻负面影响对于推动ADRD研究和防止科学进步的障碍至关重要.
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