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.

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Publication Details

Journal
Annals of Neurology
Published
2026-04-21
DOI
https://doi.org/10.1002/ana.78220
Primary Topic
Parkinson's Disease Mechanisms and Treatments
Type
article
Field-Weighted Citation Impact
0.00
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article

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

Paul Lugo, Emily Flagg, Bridget A. McMahon, Caitlin Kelliher et al.
Annals of Neurology
Parkinson's Disease Mechanisms and Treatments
article

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

Paul Lugo, Emily Flagg, Bridget A. McMahon, Caitlin Kelliher, Frederic S. Goldstein, Haley Myers, Brittney Henry, Maggie Kuhl, Barbara S. Robinson, Christina Destro, Kevin Kwok, Marty Acevedo, Sara Sugihara, Auldyn Matthews‐McGee, Kenneth Marek, the Parkinson's Progression Markers Initiative, Craig E. Stanley, Carey Hidaka, Courtney Pico, Linda Comerci, Jay Robinson, Laura E. A. Heathers, Tatiana Foroud, Allen Dance, Kathryn Brodkin, Mandy Miller, Brian Duggan, Catherine M. Kopil, Roseanne D. Dobkin, Lynell P. Lemon, Martha Clark, John Moran, Hyam Kramer, Thomas F. Tropea, Robert D. Paulson, Philip T. Alongi
article en

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.

Annals of Neurology
Johnson University (US), Michael J. Fox Foundation (US), Advisory Board Company (United States) (US), Institute for Neurodegenerative Disorders (US), Indiana University School of Medicine, Indiana University – Purdue University Indianapolis (US), University of Pennsylvania (US)
Partnerships for the goals
Openalex Percentile: Top 13%
Parkinson's Disease Mechanisms and Treatments
DOISourceOpenAlex
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