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 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 PD GENEration, you can discover your individual connection to the disease, while helping map the future of tomorrow’s breakthroughs:
- 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
Our Findings So Far
More than 17,000 people have joined PD GENEration – and growing. Through the study we’ve learned that 13% of people have a 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 registry, a critical need for scientists to discover new patterns behind the disease and ultimately pursue novel or more tailored treatments.
Ready to participate?
We are looking for people who have been diagnosed with Parkinson’s.
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. The genetics behind Parkinson's 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 clinicians 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.
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 seven Parkinson's related genes tested for with PD GENEration.
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Our Study Partners and Related Research
The Foundation acknowledges the leadership of the Soutter Family, whose early support accelerated planning and launch of the PD GENEration Initiative.
The Foundation is thankful to our founding sponsors: Biogen and Sanofi.
Morehouse Healthcare
PD GENEration has partnered with Morehouse Healthcare to expand genetic research in the Black community. Morehouse Healthcare is the first historically Black institution of medicine to become a PD GENEration research site. PD GENEration is designed to be inclusive and accessible to populations of focus — groups needing increased access to care, resources and research efforts.
Parkinson's Disease Gene Curation Expert Panel (PD GCEP)
The Parkinson’s Foundation was appointed by the NIH to convene an international multidisciplinary expert panel of the world’s most esteemed molecular geneticists, clinicians with a general research focus, and PD-specific genetic counselors. The PD GCEP aims to support the expansion of high-quality and expert-driven variant curation for PD-relevant genes such as LRRK2, GBA, SNCA, PRKN, PINK1, PARK7, AND VPS35.
You can read a recent paper published on behalf of PD GCEP, The Commercial Genetic Testing Landscape for Parkinson’s Disease.