PD GENEration: Mapping the Future of Parkinson's Disease
Join the Study
PD GENEration: Mapping the Future of Parkinson’s Disease is a global research study that provides genetic testing and genetic counseling at no cost for people diagnosed with Parkinson’s disease (PD).
People can participate by enrolling online and completing an at-home blood collection kit or in-person at one of our participating PD GENEration clinical sites. Unlike traditional research studies, participants not only contribute to scientific advancement but also receive something back — their test results.
By joining the study, participants can discover new knowledge about their genetic makeup, understand their family’s risks and help benefit generations to come.
We appreciate your support of this landmark clinical study. If you have questions, please contact the site you enrolled with or call our Helpline at 1-800-4PD-INFO (1-800-473-4636).
Why Participate
By joining the PD GENEration study, you can discover your connection to the disease, while helping map the future of tomorrow’s breakthroughs. Benefits of participating include:
- Improve management of your disease
- Learn about your family’s risk for Parkinson’s
- Increase understanding of the biology behind the disease
- Accelerate clinical trial enrollment
- Contribute to improved care and treatment for you and future generations
enrolled globally in PD GENEration
genetic positivity in PD risk genes
had not participated in research previously
What have we learned?
More than 20,000 people have joined PD GENEration — and enrollment is growing. Through the study we have learned that around 13% of people have a Parkinson’s related genetic variant, which is far greater than earlier scientific estimates of 5%–10%.
This means more people may be eligible for clinical trials today and that we are closer to building a large and diverse global PD genetics registry, a critical need for scientists to discover new patterns behind the disease and ultimately pursue novel or more tailored treatments
Want to learn more about our results?
For more specifics information on the results from the PD GENEration study check out our data and publication page.
Where can I participate?
The Power of Genetic Testing
Through PD GENEration, the Parkinson's Foundation aims to provide genetic testing and genetic counseling at no cost to all people living with PD.
Genetic testing can be a powerful tool to uncover biological pathways that cause Parkinson’s, eventually leading to improved treatments and care. Our genetics behind Parkinson's page can help explain how and why a person’s experience with the disease differs from others. Genetic testing can also help people with PD and their care team identify whether they may qualify for enrollment in certain clinical trials.
Currently, genetic tests for PD are often not affordable and not covered by health insurance. In addition, many genetic tests do not offer genetic counseling, which can help interpret test results. Therefore, most people with PD and their clinicians do not know if they carry genetic changes in important Parkinson’s-related genes.
Learn more about variants in PD related genes
What is Genetic Counseling?
Genetic counselors are healthcare professionals who help interpret genetic test results and explain the implications of the results for the individual tested, as well as for family members. The PD GENEration study uniquely offers genetic counseling in both English and Spanish to all people with PD.
Genetic testing helps estimate the risk of developing Parkinson's but is not a diagnosis and cannot provide a timeline for the possibility of developing a disease. With any genetic test results, it is important to discuss your results with a licensed genetic counselor.
I was really excited to participate in PD GENEration because I knew I would get to talk to a genetic counselor, and I would see the results. PD GENEration was my first research study and I’ve participated in five studies since.
Security and Confidentiality
Data contributed to PD GENEration will be kept anonymized and secure. DNA samples will be stored by Fulgent Genetics. All data shared with the research community will be kept confidential to protect patient health and personal information.
What genes does PD GENEration test?
Learn about the variants in Parkinson's related genes tested for with PD GENEration.
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Our Study Partners
The Foundation recognizes our founding sponsors: Biogen and Sanofi
The Foundation is thankful for continued support from the Aligning Science Across Parkinson’s (ASAP) and Global Parkinson’s Genetics Program (GP2).
Already participated in the PD GENEration?
Check out our post-study resources.