PD GENEration: Mapping the Future of Parkinson's Disease
Join the Study
PD GENEration: Mapping the Future of Parkinson’s Disease is a national initiative that offers genetic testing for clinically relevant Parkinson's-related genes and genetic counseling at no cost for people with Parkinson’s disease (PD). Participation can be either in-person at one of our participating Centers of Excellence sites or from home through a telemedicine appointment and at-home cheek swab collection kit.
At the start of this year, we reached a significant 50% recruitment milestone —providing genetic testing and counseling to 7,500 participants. Currently, 10,510 people with PD have enrolled (70% to our recruitment goal) in the study. The study has identified that 12.7% of participants have a genetic form of PD.
We are now accepting new PD GENEration participants on a rolling basis. Due to high interest and limited funding, we are providing testing for up to 150 participants per month. Please note that there may be a wait time of up to three months before receiving a testing kit. The Foundation is committed to expanding access to this study and will increase testing availability proportionate with funding.
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.
Why Participate
- Improve management of your disease in the future
- Learn about your family’s risk for Parkinson’s
- Help scientists understand Parkinson’s disease
- Improve Parkinson’s care and research
- Accelerate enrollment in clinical trials
- Aid in development of improved treatments and personalized medicine for you and future generations
Ready to participate?
We are looking for people who have been diagnosed with Parkinson’s.
Where can I participate?
genetic tests completed, as of June 2023
of PD GENEration participants have a genetic link to PD, as of June 2023.
Support the PD GENEration Genetic Testing with a Donation
PD GENEration: Mapping the Future of Parkinson's Disease is a national initiative that offers genetic testing for clinically relevant Parkinson's-related genes and genetic counseling at no cost for people with Parkinson's disease (PD). If you want to support PD GENEration, please click on one of the donation buttons below. Donations cannot be directed to support an individual.
The Power of Genetic Testing
Genetic testing can be a powerful tool to uncover biological pathways that cause Parkinson’s disease (PD), and this understanding can lead to improved treatments and care for all people with Parkinson’s. Understanding genetic differences across people with Parkinson's can help identify clues about 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. Importantly, 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. Through PD GENEration, the Parkinson's Foundation aims to address this unmet need.
By contributing your genetic testing results to this program, you have the opportunity to help accelerate scientific research to improve understanding of PD and potentially identify new and/or better treatment options.
Genetic Testing and Genetic Counselors
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.
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.
I have Young-Onset Parkinson's and PD GENEration gave me incredible insight into my own Parkinson's. It better abled me to educate my family members who would ask if they are carrying the same gene I have.
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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.
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.
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.