PD GENEration, a new initiative of the Parkinson’s Foundation, will give patients access to free genetic testing and counseling. The results will also be used to help uncover new treatments for the disease.
The Parkinson’s Foundation is giving people with Parkinson’s Disease—along with researchers—an opportunity to better understand PD at a genetic level.
The foundation recently announced PD GENEration: Mapping the Future of Parkinson’s Disease, a national program that will offer free genetic testing and counseling for thousands of Parkinson’s patients. Only 10 to 15 percent of people with Parkinson’s have the genetic form of the disease, and in most cases, they don’t know it, according to a foundation press release.
That genetic information could help better inform highly targeted treatments. “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,” Parkinson’s Foundation Chief Science Officer James Beck, Ph.D., said in the statement.
The results will also help patients and their doctors determine whether they may be eligibile to participate in clinical trials, the foundation said.
The program will be offered through the Parkinson’s Foundation Centers of Excellence network and Parkinson Study Group. The initiative is being launched in a pilot program at Columbia University Irving Medical Center and will add additional sites, with a goal of bringing 600 participants into the study. After the pilot period, the program will expand nationally to up to 50 centers of excellence and study group sites and will offer genetic testing and counseling for up to 15,000 patients with Parkinson’s by 2024.
The program will be supported by the clinical laboratory Fulgent Genetics, which will analyze and store the samples collected in the tests. The resulting data will be held confidentially in a secure database at the University of Florida for future research.
John L. Lehr, president and CEO of the Parkinson’s Foundation, said the goal of the program is “to improve Parkinson’s care by accelerating and supporting research.”
“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,” he said in the release.