The PD GENEration program will offer no-cost genetic testing for Parkinson-related genes and genetic counseling, using the data for future research into the development of personalized medicine and interventions in Parkinson disease.
James Beck, PhD, chief scientific officer of the Parkinsons Foundation
James Beck, PhD
The Parkinson’s Foundation announced that it has launched a first-of-its-kind nationwide initiative which offers no-cost genetic testing for Parkinson-related genes and genetic counseling for participants to better understand their results.1 The program, dubbed PD GENEration: Mapping the Future of Parkinson’s Disease, will use the data collected for future research into the development of personalized medicine and interventions for Parkinson.2
The process is 4 steps: Attending an appointment at a Center of Excellence or Parkinson Study Group site, developing the results, meeting with a health care professional, and filling out a post-process survey.
"Between 10% and 15% of people with Parkinson have a genetic form of the disease," said James Beck, PhD, chief scientific officer of the Parkinson's Foundation, in a statement. "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 [Parkinson]."
According to the Parkinson’s Foundation, the program will also seek to help those who currently have Parkinson disease, with the results potentially identifying those who could be candidates for clinical trials. As of now, those with Parkinson tend to be unable to purchase these types of tests, or the tests are not covered by health insurance. This can lead to a lack of understanding of the presence of possible mutations in genes relevant to the disease, such as LRRK2 or GBA.
PD GENEration will start out through the Columbia University Irving Medical Center’s pilot program. Additional pilot sites are expected to be announced later this summer. The enrollment goal is 600 participants. After the pilot period, the Foundation stated its desire to expand to approximately 50 Centers of Excellence and Parkinson Study Group sites across the US next year. All told, they plan to offer genetic testing and counseling for up to 15,000 people with the disease.
According to the Foundation, its Centers of Excellence network comprises of several medical centers treating more than 145,000 people with Parkinson, setting the highest standards of Parkinson's care worldwide.
"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."
Anne Hall, JD, a patient research advocate, and retired senior executive with the US Department of Health and Human Services, expressed her excitement to participate in such a program in a statement.
The program is being supported by Fulgent Genetics, which will process, analyze, and store the DNA samples using its experience in next-generation genetic testing at scale. The University of Florida CTSI Data Coordinating Center will ensure all data contributed to PD GENEration is secure and confidential, according to the Foundation. As for the study operations, the University of Rochester Clinical Trials Coordination Center will manage them.
"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, in a statement. "We are thrilled to launch the pilot of this unique initiative which offers the [Parkinson] community the opportunity to learn more about their specific diagnosis, and at the same time help scientists advance the understanding of [Parkinson]."
1. Parkinson's Foundation Launches First-of-its-Kind Free Genetic Testing Initiative for People with Parkinson's Disease [press release]. New York, NY, and Miami, FL: Parkinson’s Foundation; Published July 16, 2019. prnewswire.com/news-releases/parkinsons-foundation-launches-first-of-its-kind-free-genetic-testing-initiative-for-people-with-parkinsons-disease-300884997.html. Accessed July 18, 2019.
2. PD GENEration: Mapping the Future of Parkinson’s Disease. Parkinson’s Foundation website. parkinson.org/PDGENEration. Accessed July 18, 2019.