The Parkinson’s Foundation is establishing a new program offering genetic testing and counseling to Parkinson’s patients within its Centers of Excellence network to advance research, knowledge, and patient care.
The foundation’s new Genetic Initiative will create the largest database of genetic data for active Parkinson’s disease. The information will be collected via the Parkinson’s Outcomes Project — the largest, ongoing clinical study of the disease with more than 10,000 participants in five countries.
Linking genetic information to data on clinical progression and outcomes will contribute to scientific knowledge and research, and help improve care for patients.
“For people with Parkinson’s, genetic tests are either not available, not affordable, and not covered by health insurance or offered in tandem with genetic counseling,” John L. Lehr, CEO of the Parkinson’s Foundation, said in a press release. “We look to solve that by offering genetic testing, coupled with counseling in a clinical setting where doctors and patients can work together to best manage the disease.”
Providing genetic testing to Parkinson’s disease patients could also help accelerate clinical trials, ensuring patients know their genetic status to enroll in trials for specific gene variants.
“Most people with Parkinson’s do not know their genetic status and therefore do not know if they will be eligible for the next generation of clinical trials,” said Jon Stoessl, MD, chair of the Parkinson’s Foundation Scientific Advisory Board. “With this initiative, a patient’s genetic status will be available to help inform clinical decision-making from the start, as well as track and analyze outcomes over time in a more comprehensive fashion.”
While a genetic cause is estimated to contribute to 10-15 percent of Parkinson’s disease cases, researchers believe that environmental factors and their interplay with patients’ genetic background may determine the risk for developing the disease.
A comprehensive panel of experts — geneticists, clinicians, researchers, and ethics advisers — will be involved in the initiative. The first sites implementing the program will be announced in fall 2018. The foundation’s Centers of Excellence network includes 42 academic medical centers around the world, including 28 in the United States.
“What makes this initiative unique is its novel approach of offering genetic testing for relevant Parkinson’s-related genes in an easily accessible, clinical environment through our network,” said James Beck, PhD, chief scientific officer at the Parkinson’s Foundation. “We expect that this will accelerate enrollment in clinical trials for the next generation of treatments and help facilitate the use of genetic information to improve care and expand research.”
The idea to launch the Genetic Initiative was inspired by discussions with Roy Alcalay, MD, MS, an expert in the genetics of Parkinson’s disease and assistant professor of neurology at Columbia University, and a Parkinson’s Foundation Scientific Advisory Board Member.