Rahman-Filipiak Annalise, Chin Nathaniel A, Kohl Haley, Reader Jonathan M, Erickson Claire M, Dickerson Bradford C, Aggarwal Neelum T, Johnson Sterling C, Mormino Elizabeth C, Clark Lindsay R
Department of Psychiatry, Research Program on Cognition & Neuromodulation Based Interventions, University of Michigan, Ann Arbor, Michigan, USA.
Department of Neurology, Michigan Alzheimer's Disease Research Center, University of Michigan, Ann Arbor, Michigan, USA.
Alzheimers Dement. 2025 Jun;21(6):e70418. doi: 10.1002/alz.70418.
The Consortium for Clarity in Alzheimer's Disease and Related Dementias Through Imaging (CLARiTI) Return of Results Core aims to develop tools and a framework for disclosing individual results at Alzheimer's Disease Research Centers (ADRCs). An understanding of current disclosure practices is necessary to generate this protocol.
All 37 ADRCs received a survey between January and April 2024; 36 provided valid responses.
Most ADRCs disclose diagnosis and cognitive results to participants with impairment, and disclosure of biomarker data (e.g., amyloid and tau positron emission tomography) has accelerated since 2019. Though less common, disclosure to unimpaired participants has increased since 2019. Motivators for disclosure include to thank participants, for recruitment/retention, and to help inform health-care decisions. Barriers include limited expertise and infrastructure, concerns about clinical actionability, and risks to participants.
The ADRC network is invested in sharing research results. While some concerns remain, CLARiTI will critically evaluate a standardized approach to sharing these results.
Individual research results disclosure has increased significantly since 2019. Results are shared more frequently with cognitively unimpaired participants. Disclosure requires interdisciplinary teams including physicians and psychologists. Disclosure motivations include enhancing retention and supporting clinical care. Barriers include limited resources/expertise and potential participant risks.
通过成像实现阿尔茨海默病及相关痴呆症结果清晰化联盟（CLARiTI）结果反馈核心旨在开发工具和框架，以便在阿尔茨海默病研究中心（ADRCs）披露个体结果。要制定此方案，有必要了解当前的披露做法。
2024年1月至4月期间，所有37个ADRCs均收到一份调查问卷；36个提供了有效回复。
大多数ADRCs会向有损伤的参与者披露诊断和认知结果，自2019年以来，生物标志物数据（如淀粉样蛋白和tau正电子发射断层扫描）的披露有所加速。虽然向未受损参与者的披露不太常见，但自2019年以来有所增加。披露的动机包括感谢参与者、用于招募/留住参与者以及帮助为医疗保健决策提供信息。障碍包括专业知识和基础设施有限、对临床可操作性的担忧以及对参与者的风险。
ADRC网络致力于分享研究结果。虽然仍存在一些担忧，但CLARiTI将严格评估分享这些结果的标准化方法。
自2019年以来，个体研究结果的披露显著增加。结果更频繁地与认知未受损的参与者分享。披露需要包括医生和心理学家在内的跨学科团队。披露动机包括提高留存率和支持临床护理。障碍包括资源/专业知识有限以及潜在的参与者风险。
