In addition to helping patients better understand their disease, the program aims to improve Parkinson’s therapies — and enable personalized treatments — by advancing research into its genetic origins and differences.
The new PD GENEration: Mapping the Future of Parkinson’s Disease sites are Massachusetts General Hospital, Northwestern Medicine in Chicago, Struthers Parkinson’s Center at Park Nicollet in Minnesota, the University of California San Diego, and the Perelman School of Medicine at the University of Pennsylvania.
They join Columbia University Irving Medical Center in New York, initiative’s first site.
All are part of the Parkinson’s Foundation Centers of Excellence network, made up of 48 leading medical centers worldwide, including 34 in the U.S. that treat more than 185,500 PD patients.
This pilot study’s goal is to enroll 600 people. Longer term goals are to establish 50 Centers of Excellence and Parkinson Study Group sites in the U.S. that can provide testing and counseling to some 15,000 Parkinson’s patients.
“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, in a press release. “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.”
Investigators will use test results in work to develop better PD therapies and personalized medicine. Understanding genetic differences across those with Parkinson’s can help reveal necessary clues about how and why each patient’s disease experience differs.
Another study goal is to encourage patients to take part in clinical trials based on their test results. Genetic tests for Parkinson’s are now either unavailable or unaffordable, and largely not covered by private health insurance. In many cases, genetic counseling is not included.
“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, the foundation’s chief scientific officer. “Now, even more people with PD will have better access to their genetic data through their clinicians.”
Enrollment sites and contact information for the PD GENEration program can be found here. The main criteria for participation is a confirmed PD diagnosis. All data shared with the research community will be kept confidential, the foundation states.
“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, an 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,” Wills added.