The EPAD Research Participant Panel
It is important to the EPAD team that we build a conversation with our participants and give them an active role in influencing the design, conduct and reporting of research. Our participants are our partners in this project too. To support this, the EPAD Research Participant Panel has been established. Currently, there are panels running in Edinburgh and Barcelona, and more are planned. Eileen is one of our participants and a member of the EPAD Research Participant Panel in Edinburgh – read Eileen’s EPAD story.
We have also worked with potential EPAD participants to inform our ethics guidance and practice. The Approaches to the Communication of Alzheimer’s disease Risk (ACAR) study, led by our ethics team, explored potential EPAD participants’ perspectives on the potential benefits, risks and implications of learning test results related to the risk of Alzheimer’s disease and developed recommendations for communicating this information.