Objective: To describe the formation and impact of the Parkinson’s Progression Markers Initiative (PPMI) Community Advisory Board (CAB).

Background: Community advisory boards are critical partners in patient-focused drug development and participant-informed research practices, integrating input in the design and implementation of accessible research studies. In 2022, PPMI established a CAB to improve study engagement (including recruitment and retention), to partner with study leadership on priorities and to serve as a model for other research programs. PPMI is a global, longitudinal observational study that collects clinical, biologic and imaging data from 3,500+ people with and at risk for Parkinson’s disease and control volunteers to deeply phenotype disease etiology and progression. PPMI’s open-access data and study design are a resource for the field.

Method: Twelve CAB members (PPMI participants and research advocates) were identified by The Michael J. Fox Foundation and PPMI site teams. The CAB meets quarterly via teleconferencing platform with study staff and/or leadership to discuss topics such as eligibility and screening criteria, specific parts of the study (e.g., brain donation) and strategies to improve study experience. CAB members also attend the in-person PPMI Annual Meeting, review materials, participate in focus groups and test new parts of the study.

Results: At the 2023 PPMI Annual Meeting, CAB members voiced concerns around wanting access to personal results from study tests. This spurred an extensive initiative — requiring widespread resourcing across teams — to return personal research information to participants. CAB members attended a focus group, reviewed educational materials and participated in user testing in the online PPMI participant portal. CAB members identified issues that the study team addressed. This included fixing incorrect display of results, developing a protocol to manage participants in distress, creating graphics and adding clarifying language. More than 1,500 participants have consented to learn their results.

Conclusion: The CAB offers an opportunity to pressure test and get inputs that inform study priorities and programs. Their tangible impact helps shape how PPMI operates. This model of partnering with participants can serve other research studies.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/establishing-and-leveraging-a-community-advisory-board-to-guide-study-design-speed-recruitment-and-encourage-retention/