Increasing Access to Whole Genome Sequencing and Genetic Counseling for People Living with Parkinson’s Disease Through PD GENEration
James Beck1, Kamalini Ghosh Galvelis1, Megan Dini1, Nicola Bothwick1, Allison Dilliott1, Rebeca De Leon1, Lark Caboy1, Ignacio Azcarate1, Margaret Caulfield1, Anny Coral-Zambrano1, Melissa Nicewaner1, Joshua Ruffner1, Addison Yake1, Cornelis Blauwendraat2, Roy Alcalay3
1Parkinson's Foundation, 2Aligning Science Across Parkinson's, 3Columbia University
Objective:
Expanding access to clinical whole genome sequencing (WGS) and genetic counseling on a global scale to people living with Parkinson’s disease (PD).
Background:
PD GENEration (NCT04994015), sponsored by the Parkinson's Foundation in partnership with the Global Parkinson’s Genetics Program (GP2), offers WGS and return of results with genetic counseling to people living with PD (PwP) in over 8 countries in the Americas and Israel. Testing includes a panel of 7 PD-associated genes and 2 optional, secondary panels: 21 genes linked to PD/parkinsonisms and 10 non-PD hereditary cancer and heart disease genes that are clinically actionable.
Design/Methods:
PD GENEration expanded site access in 2025 by adding 16 local sites in the Americas, Canada and Israel, bringing the total site count to 71. Enrollment access and study support were increased by adding a national consenting site model in the US where five selected sites support online enrollment through the PD GENEration website via virtual study visits with study coordinators and an additional 22 community-based sites directing participants to enroll into the study online.
Results:
The new model yielded a 66% increase in enrollment over 2024 with 7,619 participants enrolled in the 9 month period since the launch of the new enrollment model in January, 2025. In addition, 1,210 participants were enrolled in Latin America. Peak study enrollment was in April 2025, with 1,071 participants enrolled and is now averaging 917 per month. As of Sep 11, 2025, PD GENEration has enrolled 27,972 participants.
Conclusions:
The increase in enrollment demonstrates the success of the new national consenting site model as well as the enthusiasm of the Parkinson’s community in participating in the study. Site expansion continues with increasing reach in Latin America and Israel, specifically.
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