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. 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. Learn more about the at-home test process in this video.
For questions about enrollment, email Genetics@Parkinson.org.
Where Can I Participate?
In-Person Testing is offered at select sites across the United States. We will continue to expand the study to more Centers of Excellence and Parkinson Study Group sites. To see if a PD GENEration site is near you and to schedule an appointment, enroll now.
PD GENEration is also offered through an at-home test. To schedule your at-home appointment, enroll now.
What to Expect for At-Home Testing
- Schedule your appointment by contacting a site.
- There will be 3 key steps:
- Screening appointment (phone or video call 15-30 minutes): Confirm your eligibility and provide your consent to join the study.
- PD GENEration appointment (video conference call 2 hours): Complete clinical assessments and cheek swab collection using the at-home kit.
- Genetic Counseling appointment (phone call 15-30 minutes): Receive and review your test results with a genetic counselor.
- Consider having a loved one, family member or care partner assist you with the PD GENEration appointment.
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.
Improve management of your disease in the future
Learn about your family’s risk for Parkinson’s disease
Help scientists understand Parkinson’s disease
Improve Parkinson’s disease care and research
Accelerate enrollment in clinical trials
Aid in development of improved treatments and personalized medicine for you and future generations
Sign Up for Email Updates
We invite you to sign up to receive email updates about PD GENEration: Mapping the Future of Parkinson’s Disease. In the future, if you wish to stop receiving updates about this initiative you may opt out at any time.
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.
The Foundation acknowledges the leadership of the Soutter Family, whose early support accelerated planning and launch of the PD GENEration Initiative.