Actively Recruiting
Parkinsons Foundation PD GENEration Genetic Registry for Parkinsons Disease Genetic Data Collection and Research
Led by Parkinson's Foundation · Updated on 2025-05-21
25000
Participants Needed
56
Research Sites
N/A
Total Duration
AI-Summary
What this Trial Is About
Researchers are creating a central repository to collect genetic data related to Parkinsons Disease PD from individuals who agree to provide their data and leftover DNA from clinical genetic tests. This study aims to better understand the genetic mutations associated with PD and support future research. It focuses on people diagnosed with PD who meet specific clinical criteria and are willing to learn about their genetic testing results. Participants undergo genetic testing for seven PD-related gene variants, including GBA, LRRK2, SNCA, VPS35, PRKN, PINK-1, and PARK7. Counseling is provided by a clinician, physician, or genetic counselor to help participants understand their results. The study is observational and collects data through surveys completed online, in person, or on paper. Throughout the study, participants complete surveys and provide consent for data collection and genetic testing. Researchers measure the prevalence of PD-related genetic mutations and assess how well participants understand their genetic information through counseling. The studys duration includes a 6-month period for observing these outcomes and educating participants, with ongoing data collection for future research use.
CONDITIONS
Brief Title
Parkinson's Foundation PD GENEration Genetic Registry
Research Team
K
Kamalini Ghosh, MS
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