What question did this study set out to answer?

The aim is to explore how participant engagement shapes research protocols and enhances study design.

April 23, 2026

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

Key Points

The aim is to explore how participant engagement shapes research protocols and enhances study design.
Engaging volunteers through a Community Advisory Board.
Soliciting feedback during in-person events and ongoing communication with site teams.
Implementing participant suggestions to modify study procedures and protocols.
Establishment of the myPPMI online platform shaped by participant input.
Development of educational resources on lumbar punctures based on participant feedback.
Enhanced procedures for engaging diverse populations and facilitating travel logistics.

Abstract

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.

Bookmark

Cite This Study

Kuhl et al. (Tue,) studied this question.

synapsesocial.com/papers/69e9bb2285696592c86eceed https://doi.org/https://doi.org/10.1002/ana.78220

Also Consider

Synapse has enriched 5 closely related papers on similar clinical questions. Consider them for comparative context:

Bookmark