Objective: To establish a large, longitudinal online cohort linked with a selected, intensively assessed cohort of people with and without PD to characterize development and progression of disease, enabling therapeutic development.
Background: The cost and participant burden of in-person research evaluations limit the large cohorts and frequent, long-term assessments needed to answer many research questions in PD. Through a web-based platform, PPMI Online aims to (1) implement staged screening to identify prodromal PD and (2) supplement in-person assessments with participant reported outcomes (PROs).
Method: Adults aged > 18 are eligible and recruitment sought to target people with PD and people at risk of PD. PROs assess motor function, mood, quality of life, health history, and cognition quarterly. Prodromal risk algorithms identify individuals eligible for additional remote and in-person assessments (e.g., olfactory testing, dopamine transporter imaging), some of whom will go on to enroll in the in-person PPMI. Online data are linked to in-person data for the subset participating in in-person assessments. De-identified data will be available to the research community. Initial activation in the US, reported here, will be expanded internationally.
Results: In the initial 7 months (July 2021 through February 2022) , 25,256 people registered, 22,194 people (7,391 PD, 14,803 not PD) completed informed consent, and 14,855 (4,622 PD and 10,324 without PD) entered demographic data [Table 1]. Participants came from all 50 states. Eighty-two percent of PD participants and 43% of non-PD participants were > 60 years old [Figure 1]. Completion of individual questionnaires for the first visit (18 questionnaires in total) ranged from 89% to 97% in people with PD and 89% to 96% in people without PD.
Conclusion: The PPMI Online study shows good enrollment and questionnaire-completion rates with wide geographic representation and was able to identify many people with characteristics related to PD. Online data collection can be a successful approach, supplementing in person assessments and reducing participant burden. Efforts to improve cohort diversity are underway.
To cite this abstract in AMA style:
E. Brown, D. Alonso, L. Chahine, C. Coffey, R. Dobkin, M. Korell, A. Lorenzo, C. Marras, W. Poewe, T. Sherer, A. Siderowf, T. Simuni, E. Tolosa, J. Valverde Twiggs, D. Weintraub, S. Chowdhury, K. Marek, C. Tanner. Parkinson’s Progression Markers Initiative (PPMI) Online expands biomarker research in Parkinson’s disease (PD) [abstract]. Mov Disord. 2022; 37 (suppl 2). https://www.mdsabstracts.org/abstract/parkinsons-progression-markers-initiative-ppmi-online-expands-biomarker-research-in-parkinsons-disease-pd/. Accessed May 18, 2025.« Back to 2022 International Congress
MDS Abstracts - https://www.mdsabstracts.org/abstract/parkinsons-progression-markers-initiative-ppmi-online-expands-biomarker-research-in-parkinsons-disease-pd/