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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.

ENROLL NOW

For questions about enrollment, email genetics@parkinson.org.

Where Can I Participate?

In-Person

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.

At-Home Test

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:
    1. Screening appointment (phone or video call 15-30 minutes): Confirm your eligibility and provide your consent to join the study.
    2. PD GENEration appointment (video conference call 2 hours): Complete clinical assessments and cheek swab collection using the at-home kit.
    3. 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.

PDGENEration Infographic

The Power of Genetic Testing

Research scientistGenetic 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.

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.

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