Parkinson’s Foundation to Accelerate Research Through Expanded Genetic Testing and Counseling Study

Grant funding from Aligning Science Across Parkinson’s through the Global Parkinson’s Genetics Program will continue to drive understanding of the disease’s genetic underprints by significantly expanding landmark PD GENEration study.

NEW YORK & MIAMI (February 6, 2024) – Through its Global Parkinson’s Genetics Program (GP2), Aligning Science Across Parkinson’s (ASAP) has awarded the Parkinson’s Foundation a grant that will significantly expand its landmark international genetics study, PD GENEration: Mapping the Future of Parkinson’s Disease. The study provides genetic testing and genetic counseling to people with Parkinson’s disease (PD). ASAP's funding will allow the Foundation to accelerate the study’s impact by focusing on those who have been historically underrepresented in research.

With the generous support of ASAP, the Foundation will drive wide-scale recruitment, reaching a larger and more diverse community in the U.S., Canada, and beyond. PD GENEration is available in both English and Spanish and will expand to countries in Latin and South America. Understanding the genetics of PD among diverse populations allows researchers to compare and contrast people with PD. Every case of PD is unique, so understanding the genetics that people with PD have in common across populations could reveal key disease biology, with the potential to lead to new treatments.

To maximize the efficiency of sample and data sharing with researchers, the Foundation will also move to whole genome sequencing (WGS). This will allow researchers the fullest opportunity to investigate the genetic underpinnings of PD. In the spirit of open science championed by ASAP and the Parkinson’s Foundation, the Foundation will share research data with the Accelerating Medicines Partnership® Parkinson's Disease (AMP® PD) portal. The AMP® program is a public-private partnership between the National Institutes of Health (NIH), multiple biopharmaceutical and life sciences companies, and non-profit organizations.

The GP2 program, one of five ASAP-funded programs implemented by the Michael J. Fox Foundation, aims to improve understanding of the genetic architecture of PD by integrating ancestrally diverse populations to address a large gap in scientists’ knowledge about the disease. Led by Dr. Andrew B. Singleton and Dr. Cornelis Blauwendraat, of the NIH’s National Institute on Aging, the program’s partnership with the Parkinson’s Foundation will further increase the racial and ethnic diversity of global PD genetic data.

“ASAP is excited to provide funding to the Parkinson’s Foundation to help expand their landmark genetic study PD GENEration, which is, in turn, creating a return of results pathway to those participating in GP2 affiliated studies. We are excited to learn from this pilot in the US and South America and examine ways to expand it globally. As ASAP works to foster collaboration and resource development to accelerate the pace of discovery in Parkinson’s disease, we must prioritize diversity and ensure all populations are included in research and clinical trials,” said Ekemini Riley, PhD, managing director at ASAP.

“Genetic research offers one of the most promising pathways toward new therapies for PD,” said Roy Alcalay, MD, MS, Tel Aviv Medical Center, Israel, and the Department of Neurology, Columbia University Irving Medical Center, and lead principal investigator for PD GENEration. “It is critical that our research includes data from a diverse body of participants because no two people with PD are identical. Data is power, and by providing genetic data to study participants, PD GENEration empowers the community to be involved in additional research toward a cure. The collaboration between the Parkinson’s Foundation, ASAP, and GP2 will benefit all people who live with the disease.”

Launched in 2019, PD GENEration tests for mutations among select, clinically relevant genes to improve PD care by accelerating research to advance treatments. The study aims to make genetic testing accessible to every person with PD, helping people with the disease and their physicians identify whether they qualify for enrollment in clinical trials, and advancing research. Through PD GENEration, the Foundation works to increase participation in research across all racial and ethnic groups.

Notably, PD GENEration will continue to return genetic results to all participants through a genetic counselor, building a critical bridge between people with PD and clinicians to accelerate research collectively.

“What sets PD GENEration apart from traditional genetic research studies is that the participants receive their test results. It is a patient-facing research study,” said Parkinson’s Foundation Senior Vice President and Chief Scientific Officer James Beck, PhD. “This generous grant from ASAP will allow us to have not only a significant impact on PD research but also the thousands of participants receiving insight from their genetic testing.”

The anticipated rollout of the study expansion is in the spring of 2024. To learn more about PD GENEration, visit Parkinson.org/PDGENEration or call the Foundation’s Helpline at 1-800-4PD-INFO (1-800-473-4636) for support in English and Spanish. For questions about enrollment, email Genetics@Parkinson.org.

ASAP is a coordinated research initiative dedicated to accelerating the pace of discovery and informing the path to a cure for PD through collaboration, research-enabling resources, and data sharing. The Michael J. Fox Foundation for Parkinson’s Research is ASAP’s implementation partner and issued the grants on behalf of ASAP and GP2.

Aligning Science Across Parkinson’s is a research initiative comprised of international, multidisciplinary, and multi-institutional researchers working to address resource and knowledge gaps in the development and progression of Parkinson’s disease. ASAP is deeply rooted in the belief that we can accelerate advances by fostering a collaborative and open approach to research. For more information, visit our website and connect with us on LinkedIn, Threads, and Bluesky social media platforms.