Partnering With Participant Advisors on the Parkinson's Progression Markers Initiative

Partnership with participants on study protocols and conduct informs study design, provides novel insights, and speeds enrollment and outcomes. The Parkinson's Progression Markers Initiative (PPMI) solicits volunteer inputs through a Community Advisory Board, in-person events, and communication with site teams and centralized study services. Participant inputs have shaped PPMI procedures and protocols including (i) the myPPMI online platform, (ii) return of research information, (iii) lumbar puncture education, (iv) engaging representative populations, and (v) travel procedures. The study's methods for engaging participants and its modifications arising from those conversations provide a model for those seeking to design accessible and impactful studies. ANN NEUROL 2026.