## Breadcrumb - [Home](/) - [Advancing Research](/advancing-research) - [Our Research](/advancing-research/our-research) ## Breadcrumb - [Home](/) - [Advancing Research](/advancing-research) - [Our Research](/advancing-research/our-research) # PD GENEration: Powered by the Parkinson’s Foundation ## 💡 Quick Summary - PD GENEration: Powered by the Parkinson’s Foundation is an international research initiative offering at no cost [genetic testing and counseling](/understanding-parkinsons/causes/genetics/testing-counseling "Genetic Testing & Counseling") for people living with Parkinson’s disease (PD). - Participants can enroll online or in-person. - Participants receive their [genetic results](/advancing-research/our-research/pdgeneration/genetics-behind-pd "Current Findings from PD GENEration") and contribute to advancing understanding of the biological and genetic factors behind Parkinson’s. - PD GENEration helps identify genetic variants linked to PD, accelerates clinical trial access and supports the development of personalized treatments. ![Grandma on tablet with two grandkids](/sites/default/files/styles/no_sizing/public/images/PDGENEration-mapping-future.jpg?itok=4KbIAH6v) ## Join the Study PD GENEration: Powered by the Parkinson’s Foundation is an international 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). [ENROLL NOW](https://www.parkinson.org/PDGENEration?enroll=enable) ![Video of PD Generation](/sites/default/files/styles/820x460/public/images/video-pdgeneration.png?h=17c3cd98&itok=YWJTQPq0) ### 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 35,000+ enrolled globally in PD GENEration ~12% genetic positivity in PD risk genes >75% had not participated in research previously ### What have we learned? More than 35,000 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 international 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. [LEARN MORE](/advancing-research/our-research/pdgeneration/genetics-behind-pd) ## Where can I participate? - ### In-Person In-person testing is offered at select sites across the U.S. **To find a PD GENEration site near you and to schedule an appointment,** [**enroll now**](https://www.parkinson.org/PDGENEration?enroll=enable)**.** - ### At-Home Online PD GENEration is offered through an at-home blood collection test. To enroll immediately online or to schedule a virtual appointment if you need assistance, [enroll now](https://www.parkinson.org/advancing-research/our-research/pdgeneration?enroll=enable). There are three key steps for at-home testing: 1. **Enrolling in PD GENEration**: Confirm your eligibility, read and provide your consent to join the study, and complete a short participant survey. 2. **PD GENEration at-home blood sample collection**: Complete your at-home blood sample collection using the PD GENEration Tasso+ kit. [Watch this video](/advancing-research/our-research/pdgeneration/study-resources#tasso "PD GENEration Instructions") on how to collect your blood sample. 3. **Genetic Counseling appointment** (phone or video call, 15-30 minutes): Receive and review your test results with a genetic counselor. *Results are available approximately two months after your sample is received.* Consider having a loved one, family member or care partner assist you with your PD GENEration at-home blood collection and appointments. ## 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**](/advancing-research/our-research/pdgeneration/genetics-behind-pd "Current Findings from PD GENEration") 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](/node/448) ### What is Genetic Counseling? [Genetic counselors](/blog/research/genetic-counselor-questions "Genetic Counselors Answer Top Parkinson’s Questions") 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. ![Rex Polkinghorne Headshot](/sites/default/files/styles/535x680/public/images/Blog%20Previews%20%289%29.png?h=9105c3fe&itok=tBiVvtXL) MY PD STORY: Rex Polkinghorne Meet Rex. His Parkinson’s experiences led him to find answers through our international genetics study. We accompanied Rex to his PD GENEration genetic testing and counseling sessions. [WATCH REX'S EXPERIENCE](/living-with-parkinsons/stories/rex-polkinghorne) ### 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. [READ NOW](/node/448) ## Sign Up for Email Updates ## 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). ![ASAP logo](/sites/default/files/styles/400px_wide/public/images/ASAP_Logo_trademark.png?itok=TzP0RN3H) ![GP2 Logo](/sites/default/files/styles/400px_wide/public/images/GP2-Logo.png?itok=TI4gGzXS) ### Already participated in the PD GENEration? Check out our post-study resources. [LEARN MORE](/advancing-research/our-research/pdgeneration/post-study) ## Related Materials Fact Sheets ### [ Genetics ](/library/fact-sheets/genetics) [Read Now](/library/fact-sheets/genetics) Podcasts ### [ Episode 61: The Launch of the PD GENEration Genetics Initiative ](/library/podcast/61) [Listen Now](/library/podcast/61) Videos & Webinars ### [ Neuro Talk: Top Questions About PD GENEration ](/library/videos/pdgeneration) [Watch Now](/library/videos/pdgeneration) ### Subscribe for the latest news ### Share Your Experience Did you participate in PD GENEration, our international genetics research study? We’d love to hear your story. [SUBMIT YOUR STORY](/living-with-parkinsons/my-pd-story/submit) - Share on Facebook - Share on X - Share on LinkedIn