Objective: Describe cohort engagement strategies conducted by PPMI IMPaCT Program among US participants.

Background: Retention in longitudinal studies is vital for study for data integrity/analysis.¹ Studies show effective retention of study participants(ppts) requires structured, multilayered approaches. Various challenges include logistics, transparency, and building trust. Implementation of a communication framework between study stakeholders and continuous assessment of barriers are practical considerations that show significance. Time and study personnel resources are often over-extended, and few studies focus on how remote engagement can fill the gap between resources and need. The Parkinson’s Progression Markers Initiative (PPMI) IMPaCT program initiated engagement calls to help sustain study compliance and ppt retention. This strategic use of part-time staff allows additional support for participants related to site visits and other opportunities throughout their study experience.

Method: Three PPMI IMPaCT cohorts engaged with US study ppts via video call, phone, and email to collect study feedback and provide technical support for myPPMI online ppt portal registration. Participants received email invitations to schedule remote appointments. Calls were also conducted for unscheduled participants. Thematic scripts and talking points were created to facilitate data collection during calls. Retrieved data was transcribed into reports and shared with study stakeholders and clinical sites for review and process improvement.

Results: IMPaCT staff made 6,805 contact attempts, completed 1,290 engagement and 1,170 support calls that contributed to 1,827 myPPMI portal registrations (86% of US enrollment). Average ppt study satisfaction was reported as very satisfied (4.8/5). Participant feedback was reviewed by 31 clinical sites, which led to modified lumbar puncture (8), skin biopsy (4), MRI (2), communication (5), and travel arrangement (7) processes. Expanded ppt contact with study personnel was achieved without additional site burden.

Conclusion: Strategic use of remote contact with ppts enables researchers to successfully engage ppts and optimize use of resources, leading to more cost-effective clinical trial management of study ppts while maintaining personal connections among target populations.

References: 1. Wong CA, Song WB, Jiao M, et al. Strategies for research participant engagement: A synthetic review and conceptual framework. Clinical Trials. 2021;18(4):457-465. doi:10.1177/17407745211011068

« Back to 2025 International Congress

MDS Abstracts - https://www.mdsabstracts.org/abstract/international-mentorship-in-ppmi-clinical-translation-impact-engagement-initiatives-for-clinical-participants-in-the-united-states-us/