Objective: The goal of this project was to amass a cohort of individuals with hyposmia to later invite them to participate in clinical trials for PD prevention.

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 toward accelerating therapeutic development. Since 2020, PPMI has focused on enrolling >1200 individuals with hyposmia, a predictive marker of PD.

Method: Widespread recruitment efforts and a staged-screening paradigm were employed to identify participants. Utilizing social media, TV and newspaper ads, email campaigns, paid partnerships, outreach to community partners and senior living communities, candidates over age 60 were sent to a website managed by a study partner, who conducted centralized initial screening. Participants were invited to take a smell test, University of Pennsylvania Smell Identification Test (UPSIT). Test kits were mailed to participants, who submitted answers in an online portal. Participants whose UPSIT results showed olfactory loss were invited to go to a study site for a DaTscan to further assess study eligibility. PPMI study team worked with clinical sites ensuring capacity and efficient scheduling for imaging and enrollment visits.

Results: As of late 2023 over 660,000 individuals accessed the IU screening website. Over 37,000 participants consented for screening and sent a smell test. More than 24,000 UPSITs were completed; 4700 hyposmic individuals were identified and invited to undergo a DaTscan; 1444 completed a DaTscan; 907 were invited to join the longitudinal PPMI study; 566 participants have enrolled in the clinical study.

Conclusion: Utilizing comprehensive central recruitment and screening strategies, PPMI successfully recruited hyposmic individuals for future clinical trials targeting PD prevention. Clear education on screening rationale and explanations of activities at each step has been critical to converting interested candidates to enrolled participants. Also key has been study teams working with clinical sites to project future capacity for screening and enrollment, facilitating efficient scheduling for visits. We believe our learnings may allow others in the field of PD research to recruit, screen and enroll individuals more effectively.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/assembling-a-cohort-of-hyposmic-participants-for-therapeutic-studies-aimed-at-parkinsons-disease-pd-prevention/