Parkinson’s Foundation Announces New Sites for Parkinson’s Genetic Testing and Counseling

PD GENEration program aims to identify improved treatment options and personalize medicine for people with Parkinson’s

NEW YORK & MIAMI (December 10, 2019) — The Parkinson’s Foundation is pleased to announce the addition of five new sites for PD GENEration: Mapping the Future of Parkinson’s Disease, a first-of-its-kind national initiative that offers free genetic testing and counseling for clinically relevant Parkinson’s-related genes. The new PD GENEration sites include Massachusetts General Hospital, Northwestern Medicine, Struthers Parkinson’s Center at Park Nicollet, University of California San Diego and the Perelman School of Medicine at the University of Pennsylvania, in addition to the pilot site at Columbia University Irving Medical Center.

“Through the PD GENEration program, we can continue to improve Parkinson’s care by accelerating and supporting research,” said John L. Lehr, President and Chief Executive Officer of the Parkinson’s Foundation. “We are thrilled to expand this unique initiative that offers the Parkinson’s community the opportunity to learn more about their diagnosis while helping scientists advance the understanding of the disease.”

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). The study also aims to 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.

“This program will help us better understand how people with Parkinson’s experience symptoms and respond to treatments related to this disease so that scientists can start building the foundation for precision medicine in PD,” said James Beck, PhD, Chief Scientific Officer of the Parkinson’s Foundation. “Now even more people with PD will have better access to their genetic data through their clinicians.”

The new PD GENEration sites are part of the Parkinson’s Foundation Centers of Excellence network which is comprised of esteemed medical centers treating more than 185,500 people with PD in the U.S., setting the highest standards of Parkinson’s care worldwide. The goal of the pilot study is to enroll 600 participants.

“This is an exciting time for patients and clinician scientists as the genetic advances in Parkinson’s disease are allowing us to develop targeted therapies,” said Anne-Marie Wills, MD MPH, Assistant Professor of Neurology at Massachusetts General Hospital. “This large-scale genetic screening initiative will enable patients and their providers to identify genetic mutations which can lead to personalized treatments for people with Parkinson’s disease. We applaud the Parkinson’s Foundation in their efforts to move the field forward.”

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.

To learn more about PD GENEration, call 1-800-4PD-INFO or visit Parkinson.org/PDGENEration.