Category: Education, History, Disparities (Other)
Objective: PPMI has and continues to enroll participants with idiopathic REM Behavior Disorder (iRBD) at sites in the US and Europe to acquire clinical, imaging and biomarker longitudinal data. A major strategy for enrollment was to create recruitment collaborations among sleep and movement disorder clinics.
Background: The Parkinson’s Progression Markers Initiative (PPMI) is a longitudinal, observational study launched by The Michael J. Fox Foundation for Parkinson’s Research (MJFF) in 2010 to identify biomarkers of PD. A major focus of PPMI has been to identify and assess individuals with biomarker evidence of neuronal synuclein disease (NSD) prior to symptom onset. Enrollment of iRBD in clinical studies has been dependent on close collaboration between sleep and movement disorder centers.
Method: In PPMI, twenty-six (26) of the 51 study sites self-identified as having experience in enrolling iRBD participants and were invited to the PPMI RBD recruitment initiative. Participants were required to have a clinical diagnosis of iRBD and a prior polysomnogram reviewed at the clinical site that met criteria for iRBD or clinical iRBD plus hyposmia . Strategies to increase iRBD enrollment included: collaborating with internal institution sleep specialist colleagues and sleep clinics external to their institutions to refer patients; educating local communities (via healthcare events, webinars, etc.) on RBD and the connection to brain disease (PD); and hiring additional staff (coordinators) to support RBD-specific recruitment.
Results: From 2022 to 2024, over 400 individuals with an iRBD diagnosis were recruited and consented by the participating sites collaborating with over 25 internal and external sleep clinics; 129 failed the screening criteria due to clinical iRBD diagnosis participants failing hyposmic criteria or failing to meet PPMI DaTscan criteria, and 307 participants enrolled into the PPMI Clinical study.
Conclusion: Utilizing both existing and new relationships with sleep specialist colleagues, PPMI sites in the RBD initiative successfully recruited individuals for longitudinal follow-up. Building networks among neurologists and educating local communities were crucial in targeting and enrolling the cohort.
To cite this abstract in AMA style:
J. Ricci, K. Marek, B. Mcmahon, T. Simuni, A. Videnovic, K. Chou, C. Marras, T. Mestre, C. Bae, N. Dahodwala, D. Galasko, A. Amara, D. Standaert, C. Tanner, R. Zuzuarregui, H. Attarian, A. Espay, M. Fullard, H. Fernandez, G. Riboldi, D. Shprecher, M. Muntean, S. Schade, B. Mollenhauer, E. Tolosa, M. Marti, A. Garrido, L. Stefanis, C. Koros, M. Breg, N. Pavese, D. Ledingham, K. Anderson, M. Hu, W. Oertel, A. Janzen, S. Bressman, E. During, A. Noyce, C. Simonet, L. Perez-Carbonell. Enrolling iRBD Participants in the Parkinson’s Progression Marker Initiative (PPMI) – Facilitating Collaboration between Movement Disorders and Sleep Clinics [abstract]. Mov Disord. 2025; 40 (suppl 1). https://www.mdsabstracts.org/abstract/enrolling-irbd-participants-in-the-parkinsons-progression-marker-initiative-ppmi-facilitating-collaboration-between-movement-disorders-and-sleep-clinics/. Accessed November 20, 2025.« Back to 2025 International Congress
MDS Abstracts - https://www.mdsabstracts.org/abstract/enrolling-irbd-participants-in-the-parkinsons-progression-marker-initiative-ppmi-facilitating-collaboration-between-movement-disorders-and-sleep-clinics/