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To Our PD GENEration Participants and Interested Individuals,
Thank you for your interest in the Parkinson’s Foundation PD GENEration: Mapping the Future of Parkinson’s Disease study. PD GENEration is an observational study designed to offer genetic counseling and certified genetic testing for people with Parkinson’s disease (PD) in English and Spanish. Here is our latest update!
PD GENEration by the Numbers
- 10,581 participants are currently enrolled
- Overall, 14.7% of our cohort is racially diverse.
- On average, diversity within clinical trials in the U.S. is less than 2%.
- 58% of participants were diagnosed in the last 5 years
- 74% of participants have never participated in a PD research study prior to PD GENEration, opening doors for people to join other research studies and advance the field.
- 12.7% of participants tested positive for at least one of the seven Parkinson’s-related genes.
- 30% of participants reported a first-degree relative with PD (having a parent, sibling or child diagnosed with PD).
PD GENEration's Global Reach
Recognized at the Sixth World Parkinson Congress
In July, PD GENEration was a Featured Presentation and received distinction as a Guided Poster Tour at the sixth World Parkinson Congress in Barcelona, Spain. View our posters.
Hosting a Seminar on PD Research for the Hispanic Community
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In June, the PD GENEration Latino Advisory Committee hosted its first community event in the Chicago area with more than 250 people participating virtually and in-person. The event covered critical PD topics including mental health, genetics, research myths and opportunities for clinical research.
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PD GENEration Open House with Morehouse School of Medicine
In June, we hosted an open house event highlighting the importance of becoming a Research Advocate, where a guest speaker described his experience and insight. We provided information about the upcoming Parkinson’s Foundation 2023 Learning Institute and PD GENEration.
In the News
Parkinson’s Foundation Awarded Grant from Robert W. Woodruff Foundation to Increase Access to Genetic Research in Georgia. This grant will expand genetic testing, genetic counseling and educational research opportunities for Black and African American people with PD.
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