Join the Study
The global Parkinson’s Foundation genetics study, PD GENEration: Mapping the Future of Parkinson's Disease, has partnered with Morehouse Healthcare to expand genetic research in the Black community. Morehouse is the first historically Black institution of medicine to become a PD GENEration research site.
PD GENEration offers genetic testing for clinically relevant Parkinson's disease (PD) related genes and genetic counseling at no cost for people with Parkinson's. Participation can be in-person at Morehouse Healthcare or from home through a telemedicine appointment with Morehouse Healthcare and an at-home cheek swab collection kit. Participants are encouraged to review their results with their PD doctor.
Enroll today and schedule your appointment:
PD GENEration is designed to be inclusive and accessible to populations of focus — groups needing increased access to care, resources and research efforts. To date, Morehouse has enrolled the most Black and African American participants for PD GENEration, which is on its way to reaching its 1,000 participant goal for this demographic.
The Black Community & Parkinson’s
A common misconception surrounding Parkinson's is that it only impacts older white men. Black and African American people diagnosed with Parkinson’s have unique experiences and needs when it comes to living with this disease. Challenges to PD management may include awareness of PD symptoms, difficulty finding PD specialists, and health and economic inequities that may interfere with access to care. These inequities also directly impact those who care for them.
Black and African American people with Parkinson's are often:
- Diagnosed at a lower rate than white people with the disease.
- Diagnosed later in disease progression, once symptoms considerably impact day-to-day living.
The Power of Genetic Testing
Genetic testing can be a powerful tool in discovering the biological pathways that cause Parkinson's, and this understanding can lead to better treatment and care for all people with Parkinson's. Understanding the genetic differences between people with Parkinson's can help identify clues about how and why one person's experience with the disease differs from another's. Genetic testing can also help people with PD and their doctors to identify their eligibility to participate in specific clinical trials.
Currently, genetic testing for PD is often not accessible and is not covered by health insurance. It is important to note that many genetic tests do not offer genetic counseling, which can help interpret test results. Therefore, most people with PD and their doctors do not know if they carry genetic changes in important Parkinson's-related genes. Through PD GENEration, the Parkinson's Foundation aims to meet this need.
By contributing your genetic test results to this study, you can potentially identify new and/or better treatment options alongside your doctor. By participating in PD GENE, you will have the opportunity to:
- Improve the management of your disease in the future
- Learn about the risk of Parkinson's disease for your family
- Help scientists understand Parkinson's disease
- Improve Parkinson's Disease Research and Care
- Accelerate enrollment in clinical trials
- Assist in the development of better treatments and personalized medicine for you and future generations
Security and Privacy
The information provided to PD GENEration will be kept anonymous and secure. Fulgent Genetics will store the DNA samples. All information shared with the research community will be kept confidential to protect the patient's health and personal information.
PD GENEration is committed to diversifying genetic data in the Black Community. Learn more through these resources and articles:
- NeuroTalk – Parkinson's Foundation Chief Scientific Officer, James Beck, PhD, and Morehouse School of Medicine, Assistant Professor of Neurology, Chantale Branson, MD, highlight how PD GENEration is working to reach the Black and African American community.
- Parkinson's Today Blog – Dr. Chantale Branson and Parkinson's Foundation, Director of Research Partnerships, Amasi Kumeh, celebrate the partnership between the Foundation and Morehouse while acknowledging the history of clinical trials, its impact on the Black community and the importance of diversity in genetics data.
- AARP: Black Adults Face Delays in Parkinson’s Diagnosis and Treatment (May 2023)
- U.S. News & World Report: Looked Over, Left Behind: Black Americans Face Gaps in Parkinson's Care (May 2023)
- Parkinson Report Spring 2023 - Awareness Issue
- Substantial Matters: Life & Science of Parkinson – Feature in February 2023 podcast and We Keep Moving – Denise Coley, PD GENEration participant and Parkinson’s Foundation People with Parkinson’s Advisory Council member, is dedicated to raising awareness of PD among the Black community since her diagnosis. She also serves as the Chair of Mission and Outreach Committee of the California Parkinson's Foundation Advisory Council
- We Keep Moving: Living and Thriving with Parkinson's Disease in Our Black and African American Communities – In partnership with the PD Movers, PD GENEration provided a free hard copy storybook a compilation of narratives of African American and Black individuals and caregivers who are living and thriving with Parkinson’s disease to all Black PD GENEration participants.
In collaboration with Morehouse School of Medicine, the Foundation offers the opportunity to become a PD GENEration research advocate with the 2023 Learning Institute. Through in-person training, participants learn more about Parkinson's research, priorities for the Black community and the importance of being a PD GENEration research advocate. To apply, please email PatientEngagement@Parkinson.org.
The Foundation acknowledges the leadership of the Soutter family, whose early support accelerated the planning and launch of the PD GENEration initiative.
Help us advance Parkinson’s research. Donate today to support PD GENEration.