Genetics can be a powerful tool used to help us uncover key mechanisms responsible for slowing or stopping the progression of Parkinson's disease (PD), ultimately improving care and speeding development of new treatments. Our newest initiative is dedicated to just that.
The Parkinson's Foundation Genetics Initiative is the first national Parkinson's study to offer free genetic testing plus counseling for Parkinson's-related genes through medical professionals. By 2020, the goal is to track the genetic makeup of 15,000 people with Parkinson's across approximately 50 sites in the U.S.
Researchers currently believe that understanding genetic differences across people with Parkinson's can uncover important clues about how and why every person experiences PD differently. Genetic testing may help improve care and identify whether people with Parkinson's may qualify for enrollment in certain clinical trials. However, genetic tests are either not available or not affordable, and not covered by health insurance or offered with genetic counseling. Most people with Parkinson's and their clinicians do not know if they carry genetic mutations linked to Parkinson's.
How This Study Helps
The Parkinson's Foundation aims to address this unmet need by launching a five-year initiative, offering genetic testing coupled with counseling services to people with Parkinson's through the Foundation's Center of Excellence network and Parkinson's Study Group sites . The flagship study will ultimately provide genetic information that will lead to improving care, expanding research and accelerating enrollment in clinical trials.
Genetics Initiative Goals
- Accelerate clinical trials for Parkinson's: Current genetic clinical trials may stall or fail because most people with Parkinson's and their clinicians do not know their genetic status. The Foundation will provide genetic testing and counseling to help accelerate clinical trial enrollment.
- Improve Parkinson's care and research: This study will provide clinicians and researchers with new tools, knowledge and therapy options for people with PD. This study will link genetic tracking with data from the largest-ever clinical study of Parkinson's — the Parkinson's Outcomes Project.
- Empower people with Parkinson's: Providing genetic data within a clinical setting will allow people with PD to better manage their disease and potentially improve their quality of life. Genetic data offer insights into disease progression and symptom severity that may potentially influence clinical care and treatment decisions.
How is our initiative different from at-home genetic tests?
At-home test: Genetic test offered without a clinician and genetic counseling.
Our initiative: A healthcare professional will offer genetic testing and counseling to explain test results, and a genetic counselor dedicated to the study will also be available to all participants. People with Parkinson's and their clinicians will be able to collaboratively improve care and quality of life.
At-home test: Looks for only one of many possible changes in Parkinson's genes for LRRK2 (G2019S) and GBA (N370S).
Our initiative: Will offer comprehensive testing to identify all possible changes in the gene (known as mutations) present in LRRK2 and GBA genes.
How is our initiative different from other studies?
Our initiative will provide people with Parkinson's with the detailed knowledge of their genetic status for LRRK2 and GBA1 genes, ultimately empowering them to know more about their own disease. They will work alongside their healthcare professional to capitalize on this new information while receiving genetic counseling. When it comes to care, clinicians will be better informed about their patients and can provide better treatment plans and recommend more tailored clinical trials.
The Parkinson's Foundation will launch the Genetics Initiative pilot study in April 2019 at six sites. The Foundation is recruiting 600 participants to enroll in this free study. For more information, please email Genetics@Parkinson.org.