在阿尔茨海默病研究中分享个别研究结果的推方法:一个多学科专家的德尔菲共识
Valerie Rico1, Megan Zelinsky1,2, Paul J Ford1
1Cleveland Clinic Neurological Institute, Neuroethics Program, Cleveland, OH, USA.
Journal of Alzheimer's disease : JAD
|September 25, 2025
概括
专家们就分享来自阿尔茨海默病和阿尔茨海默病相关痴呆症 (AD/ADRD) 研究的个人研究结果的最佳实践达成共识. 这些建议旨在标准化以道德为基础的方法,将结果返回给参与者.
科学领域:
- 神经科学是一个神经科学.
- 遗传学 遗传学 是一个
- 生物伦理学生物伦理学
背景情况:
- 诊断阿尔茨海默病和相关痴呆症 (AD/ADRD) 的标准正在不断发展.
- 生物标志物 (例如,粉样蛋白,) 和遗传状态 (例如,APOE) 在AD/ADRD研究中越来越重要.
- 返回个别研究结果对研究参与者来说具有个人意义.
研究的目的:
- 确定分享个人研究结果与ADRD研究参与者的推方法.
- 确定专家就将个别研究结果返回给参与者的最佳做法达成共识.
主要方法:
- 一项在线修改的Delphi研究调查了81名阿尔茨海默病研究专家在四轮的调查中.
- 方法包括有针对性的文献综述和具有定性反的7点利克特尺度调查.
- 共识被定义为对陈述达成75%或更大的共识.
主要成果:
- 评估和完善了41份最初的陈述.
- 在第3轮之后,在25个陈述上达成共识 (≥75%的同意).
- 建议涵盖研究设计,临床相关性,结果共享,沟通,咨询和后续.
结论:
- 该研究为在阿尔茨海默病研究中返回个别研究结果的标准化,有道德依据的实践提供了基础.
- 专家共识指导了与参与者分享敏感的遗传和生物标记信息的最佳实践.
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