帕金森进展标志物计划中的个体研究信息返还
本文介绍帕金森进展标志物计划（PPMI）为回应参与者长期诉求而同步实施的两项研究信息返还举措：研究信息返还项目与帕金森风险队列随机披露评估临床试验，属该领域开创性探索。
要点
- PPMI 承诺以负责任方式向研究参与者返还个体研究信息。
- 同步实施研究信息返还项目与随机披露评估临床试验。
- 披露对参与者及研究数据的影响尚待这些举措提供见解。
核心结论
- PPMI 认为应向参与者优先返还研究信息，并以负责任方式分享个体研究信息。
- 两项信息返还举措属研究信息分享的开创性研究，将赋能参与者并揭示披露的影响。
研究设计与样本
- PPMI 是一项纵向综合临床与生物标志物研究评估，参与者的持续参与是获取高质量数据的关键。
- 同步实施两项举措：研究信息返还项目与帕金森风险队列随机披露评估临床试验。
主要发现
- 随着研究演进，已明确应优先向参与者返还研究信息，因其持续且合理地提出相关请求。
- 两项举措将提供披露对参与者及研究数据影响的宝贵见解。
以上解读依据论文摘要（全文未开放获取或许可不允许翻译转载）。
原文
The commitment of Parkinson's Progression Markers Initiative participants to longitudinal comprehensive clinical and biomarker research assessment is key to its success in acquiring high quality data. As the study has evolved, it has become clear that return of research information to participants should be prioritized to provide participants with their data as they have consistently and reasonably requested. The Parkinson's Progression Markers Initiative is committed to responsible sharing of individual research information with study participants. Two initiatives dedicated to results disclosure were simultaneously implemented: the Return of Research Information program and the Randomized Disclosure Assessment in the Parkinson's At-Risk Cohort clinical trial. These are pioneering studies on research information sharing. These initiatives empower participants and will provide valuable insights on the impact that disclosure may have on participants and study data. ANN NEUROL 2026;100:S88-S96.
引用
- Tropea TF, Brodkin K, Brumm MC, et al. Return of Individual Research Information in the Parkinson's Progression Markers Initiative. Ann Neurol. 2026. PMID: 42057343. doi:10.1002/ana.78228
供执业医师工作参考，不替代临床判断；数值与分级以指南原文为准。