NEW YORK & MIAMI (July 16, 2019) — The Parkinson’s Foundation is pleased to announce the launch of PD GENEration: Mapping the Future of Parkinson’s Disease, a first-of-its-kind national initiative that offers free genetic testing for clinically relevant Parkinson’s-related genes and free genetic counseling to help participants better understand their results. Additionally, genetic testing results obtained through this study will be used for future research by scientists to develop improved treatments and personalized medicine for Parkinson’s disease (PD).
“Between 10 and 15 percent of people with Parkinson’s have a genetic form of the disease,” said James Beck, PhD, chief scientific officer of the Parkinson’s Foundation. “By better understanding how these people experience symptoms related to the disease and respond to treatments, scientists can begin to build the foundation for precision medicine in PD.”
Genetic testing through PD GENEration can also help people with PD and their physicians identify whether they may qualify for enrollment in certain clinical trials based on their test results. Currently, genetic tests are either not available or not affordable for people with PD and frequently are not covered by health insurance or offered with genetic counseling. As a result, most people with PD and their physicians do not know if they carry genetic mutations in the LRRK2, GBA or other clinically relevant Parkinson’s-related genes.
“The importance of this study is that it provides people with Parkinson’s easy access to their genetic data through their clinicians,” said Roy Alcalay, MD, MS, Department of Neurology, Columbia University Irving Medical Center, and lead principal investigator for PD GENEration. “It will enable people with Parkinson’s and their providers to integrate this information into clinical decisions and into decision making regarding future participation in clinical trials.”
PD GENEration will initially be offered through the pilot program at Columbia University Irving Medical Center, a Parkinson’s Foundation Center of Excellence. Other pilot sites will be announced later this summer, with a goal of enrolling 600 participants in the study. The Centers of Excellence network, designated by the Parkinson’s Foundation, comprises esteemed medical centers treating more than 145,000 people with PD in the U.S., setting the highest standards of Parkinson’s care worldwide.
“As a person living with Parkinson’s disease, I’m excited to participate in PD GENEration so that I can help change the course of how we manage the disease,” said Anne Hall, JD, patient research advocate and retired senior executive with the U.S. Department of Health and Human Services.
After the pilot period, the Parkinson’s Foundation hopes to expand the program to approximately 50 Centers of Excellence and Parkinson Study Group sites across the U.S. in 2020, ultimately offering genetic testing and genetic counseling for up to 15,000 people with PD.
PD GENEration is supported by Fulgent Genetics, a clinical laboratory with extensive experience in next generation genetic testing at scale. Fulgent will process, analyze and store the samples associated with the program, while the University of Florida CTSI Data Coordinating Center will keep all data contributed to PD GENEration secure and confidential. The clinical study operations will be managed by the University of Rochester Clinical Trials Coordination Center (CTCC), where the Parkinson Study Group was first formed and has decades of experience in collaborating on clinical trials for Parkinson's disease.
“The long-term goal of PD GENEration is to improve Parkinson’s care by accelerating and supporting research,” said John L. Lehr, president & chief executive officer of the Parkinson’s Foundation. “We are thrilled to launch the pilot of this unique initiative which offers the PD community the opportunity to learn more about their specific diagnosis, and at the same time help scientists advance the understanding of PD.”
To learn more about PD GENEration, call 1-800-4PD-INFO or visit Parkinson.org/PDGENEration.
About the Parkinson’s Foundation
The Parkinson’s Foundation makes life better for people with Parkinson’s disease by improving care and advancing research toward a cure. In everything we do, we build on the energy, experience and passion of our global Parkinson’s community. Since 1957, the Parkinson’s Foundation has invested more than $400 million in Parkinson’s research and clinical care. Connect with us on Parkinson.org, Facebook, Twitter, Instagram or call (800) 4PD-INFO (473-4636).
About Parkinson’s Disease
Affecting an estimated one million Americans and 10 million worldwide, Parkinson’s disease is the second-most common neurodegenerative disease after Alzheimer’s and is the 14th-leading cause of death in the U.S. It is associated with a progressive loss of motor control (e.g., shaking or tremor at rest and lack of facial expression), as well as non-motor symptoms (e.g., depression and anxiety). There is no cure for Parkinson’s and 60,000 new cases are diagnosed each year in the U.S. alone.