Disclosing Individual Results in Dementia Research: A Proposed Study Participant's Bill of Rights.

This Study Participant’s Bill of Rights is a call to action for researchers in Alzheimer’s disease and related dementias (ADRD) to proactively design clinical studies that provide the option for research participants to learn their individual research results if they choose, and in a manner that ensures study integrity. This Bill of Rights was crafted by a committee of study participants, care partners, representatives of dementia advocacy organizations, and other stakeholders in dementia research for the Advisory Group on Risk Education for Dementia (AGREEDementia). The framework developed by the Multi-Regional Clinical Trials (MRCT) Return of Individual Research Results provides a useful context for researchers to plan their studies and disclosure.

本研究参与者权利法案呼吁阿尔茨海默病及相关痴呆症（ADRD）的研究人员积极主动地设计临床研究，以便为研究参与者提供选择，如果他们愿意，可以了解自己的个人研究结果，并且要确保研究的完整性。本权利法案是由研究参与者委员会、护理伙伴、痴呆症倡导组织的代表以及痴呆症研究中其他利益相关者为痴呆症风险教育咨询小组（AGREEDementia）制定的。多区域临床试验（MRCT）个体研究结果反馈所建立的框架为研究人员规划研究和信息披露提供了有用的参考。