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Recruit & Retain Participants

Ticking Boxes or Meaningful Partnership: The Experience of Lay Representation, Participant and Study Partner Involvement in Brains for Dementia Research

Brains for Dementia Research is a planned brain donation project that involved lay input in its conception, design, and implementation. Lay representatives served on the management and tissue banking committees, spoke at recruitment and team events, and reviewed all public- and participant-facing communications. This involvement has aided recruitment and retention through a strong partnership between professional staff and the community. Ensuring good communication between professionals and lay representatives has also helped respond to the changing landscape of clinical trials. In short, lay representatives in this project bring energy, enthusiasm, and commitment that encourages the professional team.

Hayes G, Costello H, Nurock S. Ticking boxes or meaningful partnership: The experience of lay representation, participant and study partner involvement in Brains for Dementia Research. Dementia 2018 Nov;17(8):1023-1034.

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