Objective: To assess the impact of participation in PD GENEration, a large-scale genetic and counseling study for Parkinson’s disease (PD). We evaluated the recall of genetic counseling, self-reported changes in PD status, and interest in clinical trials.

Background: PD GENEration is a research initiative providing genetic testing and counseling at no cost to individuals with PD. Since 2019, it has expanded to nearly 70 sites across Israel and the Americas, enrolling over 22,000 participants. Historically, data collection occurred only at enrollment, limiting long-term insights. This study is the first re-engagement of participants to evaluate their evolving experiences and willingness to participate in clinical research.

Method: An English and Spanish survey was distributed via REDCap to PD GENEration participants who had completed genetic counseling by October 2024. Survey domains included genetic counseling recall, PD status updates, and clinical trial interest. The survey launched in October 2024 with weekly email reminders and remained active until January 2025.

Results: A total of 4,234 responses (43%) were received from 9,891 valid emails, with 3,839 linked to participant study IDs. Of these, 94% completed the entire survey, demonstrating high engagement. Most respondents (86.9%) reported no change in PD diagnosis, while 1.9% indicated a new diagnosis. Additionally, 85.2% reported they were taking PD medications, with levodopa being the most common. Over 25% (n=965) of respondents either did not recall receiving genetic counseling or did not recall receiving their genetic test report—8% of whom had a positive genetic report. Notably, 79% (n=253) of those who did not recall participation had enrolled in 2022 or 2023, suggesting recall discrepancies were not time-dependent but may be influenced by other factors. A strong interest in research was evident, with 77.8% expressing willingness to be contacted for clinical trials. While participants favored smartphone-based trials, many were hesitant about placebo-controlled studies, indicating a need for targeted educational efforts.

Conclusion: Most participants in PD GENEration recalled receiving genetic results and were very enthusiastic about additional participation in larger, more demanding studies. However, the substantial minority that did not recall details of their genetic testing highlights the importance of the development of methods for continuous engagement.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/insights-into-genetic-counseling-recall-and-clinical-trial-interest-in-pd-generation/