Objective: To assess a personalized protocol focused on maintaining contact for long-term follow-up of current and former clinical research participants

Background: PPMI-FOUND enrolls participants at PPMI clinical sites in a concurrent, remote follow-up protocol, designed to maximize retention of participants in PPMI by maintaining contact with them under a separate, centralized IRB protocol, independent of their enrolling site.

Method: Beginning in 2014 and continuing to the present, participants in PPMI are invited to enroll in PPMI-FOUND. Participants provide informed consent remotely.  Bi-annual follow-up, tailored to participants’ preferences (email, telephone, mail) in their preferred language, assesses contact information, current diagnosis, Parkinson’s disease (PD) associated risk factors. PPMI-FOUND is maintained under a separate IRB protocol from other PPMI activities, to facilitate retention in participants no longer participating in other PPMI clinical or online activities.

Results: As of 3/5/26, 1,088 PD, 232 healthy controls (HC) and 2,189 persons with prodromal disease features (PRD) enrolled, representing 44/51 current and 3 former PPMI clinical sites (32 US sites, 4 UK, 2 Spain, and 1 site in each of Canada, Austria, Germany, Greece, Italy, Nigeria, Australia). 80% of eligible participants consented [Figure 1]. Of these, 3,181 are still active in PPMI-FOUND, 192 have died, 106 have withdrawn and 30 are lost to follow-up. Mean follow-up duration is 3.71 years; longest follow-up is 10.6 years. Of 830 PPMI-FOUND participants no longer active at PPMI clinical sites, 57% are still active in PPMI-FOUND and 23% participated in PPMI-FOUND until their deaths. 89% of PPMI-FOUND participants in 3 clinical sites that closed were retained. Among 3,509 participants in PPMI-FOUND, changed diagnoses were reported by 35 participants enrolled as PD in the PPMI clinical cohort, 13 enrolled in the healthy control clinical cohort and 109 enrolled in the prodromal clinical cohort [Table 1].

Conclusion: A personalized biannual remote follow-up protocol tailored to participants’ preferences using a separate human subjects protocol provides an effective “safety net” to retain research participants unable to continue in person, and to collect diagnostic and vital status information in those participants.

Figure 1 Participants in PPMI-FOUND

Table 1

« Back to 2026 International Congress

MDS Abstracts - https://www.mdsabstracts.org/abstract/remote-longitudinal-follow-up-of-participants-in-the-parkinsons-progression-markers-initiative-ppmi/