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Abstract Details

Increasing Access to Whole Genome Sequencing and Genetic Counseling for People Living with Parkinson’s Disease Through PD GENEration
Movement Disorders
P1 - Poster Session 1 (8:00 AM-9:00 AM)
16-008

Expanding access to clinical whole genome sequencing (WGS) and genetic counseling on a global scale to people living with Parkinson’s disease (PD).
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.
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.

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. 

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.
Authors/Disclosures
James Beck, PhD
PRESENTER 		Dr. Beck has received personal compensation for serving as an employee of Parkinson's Foundation. The institution of Dr. Beck has received research support from NIH, MJFF.
Kamalini Ghosh Galvelis Mrs. Ghosh Galvelis has nothing to disclose.
Megan Dini, MA (The Parkinson's Foundation) Mrs. Dini has received personal compensation for serving as an employee of Parkinson's Foundation .
Nicola Bothwick Ms. Bothwick has received personal compensation for serving as an employee of Parkinson's Foundation.
Allison Dilliott, PhD Dr. Dilliott has received personal compensation for serving as an employee of Parkinson's Foundation. Dr. Dilliott has received research support from Canadian Institute of Health Research (CIHR).
Rebeca De Leon, Clinical researcher Ms. De Leon has nothing to disclose.
Lark Caboy, Clinical Research Coordinator Ms. Caboy has received personal compensation for serving as an employee of Parkinson's Foundation.
Ignacio Azcarate Mr. Azcarate has received personal compensation for serving as an employee of The Parkinson's Foundation.
Margaret Caulfield, PhD (MSU) The institution of Dr. Caulfield has received research support from Department of Defense.
Anny M. Coral-Zambrano Mrs. Coral-Zambrano has received personal compensation for serving as an employee of Parkinson's Foundation .
Melissa Nicewaner Ms. Nicewaner has received personal compensation for serving as an employee of Parkinson's Foundation.
Joshua Ruffner Mr. Ruffner has received personal compensation for serving as an employee of The Parkinson's Foundation .
Addison Yake Ms. Yake has received personal compensation for serving as an employee of Parkinson's Foundation.
Cornelis Blauwendraat, PhD Dr. Blauwendraat has nothing to disclose.
Roy Alcalay, MD (Columbia University) Dr. Alcalay has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Genzyme/Sanofi. Dr. Alcalay has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Biogen. Dr. Alcalay has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Gain Therapeutics. Dr. Alcalay has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Vanqua Bio. Dr. Alcalay has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Takeda. Dr. Alcalay has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Biohaven. Dr. Alcalay has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Capsida. Dr. Alcalay has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Servier. The institution of Dr. Alcalay has received research support from Michael J. Fox Foundation. The institution of Dr. Alcalay has received research support from Parkinson's Foundation. The institution of Dr. Alcalay has received research support from Silverstein Foundation. Dr. Alcalay has received personal compensation in the range of $50,000-$99,999 for serving as a Consultant with Parkinson's Foundation.