Disclosing Individual Results in Dementia Research: A Proposed Study Participant’s Bill of Rights
Sarah Walter, Angela Taylor, Jamie Tyrone, Sara Langer, John‐Richard Pagan, Cynthia Huling Hummel, Bonnie M. Wheaton, Doris T. Zallen, Allyson Rosen
Abstract
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.