As researchers advance treatments for Parkinson’s disease (PD), there is a critical need to engage with the Parkinson’s community early and often during the research process. Populations of focus — including Black and African Americans, hispanics/latinos, women and others — are often underrepresented in, and historically excluded from, research. Engaging these communities in the development of drugs and the design of clinical trials creates an opportunity for greater representation in research. The Parkinson’s Foundation is committed to making research inclusive and creating a systemic change in the PD research space.
In September 2023, the Parkinson’s Foundation hosted a new, tailored version of its Learning Institute, which trains people with Parkinson’s and care partners in research and advocacy to work alongside scientists and government agencies in the drug development process.
Held in Atlanta, GA, in collaboration with Morehouse School of Medicine, the new training sought to engage the Black and African American Parkinson’s community (people with Parkinson’s, care partners, neurologists and professionals). During a three-day training, participants found community, learned how to confidently work alongside researchers and use their voice to advocate for changes in research.
“As a Foundation, we are actively creating programs and developing partnerships that will advance health equity for populations of focus,” said Evelyn Stevens, senior director of community engagement at the Parkinson’s Foundation. “We designed this educational and interactive training to deepen our understanding of the current needs of Black and African American people living with Parkinson's, and their care partners.”
The training included exclusive insight into the Foundation’s global genetics initiative, PD GENEration: Mapping the Future of Parkinson’s, and the opportunity to enroll and receive on-site genetic testing as part of the study. Before the training, 29% of attendees had reported participating in a research study. By the end of the Learning Institute, 100% of participants with Parkinson's had completed their first research study, PD GENEration.
“Being part of the faculty for the Learning Institute to advance health equity in Parkinson’s care for the African American community was remarkable.”
- Reversa Joseph, MD, movement disorders specialist at The Ohio State University Medical Center and Chalmers P. Wylie Veterans Outpatient Clinic
“I was honored to present on ethics in research as it was vital to empower participants with an understanding of the research process, enabling them to make informed decisions about clinical trial participation,” said Dr. Joseph.
Ensuring diversity and inclusivity in Parkinson’s research is critical to accelerating breakthroughs toward a cure, which is why PD GENEration is designed to increase racial diversity among participants. In 2023, it announced Morehouse School of Medicine as the first historically Black institution of medicine to become a PD GENEration research site (read the article).
As of January 2024, 14.9% of PD GENEration participants are racially diverse. For perspective, U.S. clinical trials generally achieve less than 2% of diversity among participants.
“PD GENEration has established a strong relationship with the community through engagement and programs,” said Amasi Kumeh, director of research partnerships at the Parkinson’s Foundation. “We have become a gateway to research, helping recruit diverse participants for clinical trials and providing information about the process.”
The Learning Institute also emphasized community. The YMCA of Metro Atlanta, The Center for Movement Challenges, and a physical therapist from Emory University hosted a movement break for attendees, as exercise is proven to help people with PD manage symptoms. On the final afternoon, community members of Atlanta were invited to learn more about PD, get resources and meet the graduates of new class of 2023 Research Advocates.
No Topic Off-Limits
Black and African Americans experience health disparities when navigating Parkinson’s from day one — and are more likely to be diagnosed later in the disease stage than white people. Knowing this, the event was designed to welcome open conversation. “We wanted to provide a safe space for everyone to share their experiences and learn from one another,” Evelyn said.
For the first time, roundtable discussions were hosted. Every table was assigned a PD expert, neurologist or Parkinson’s Foundation staff member to lead a PD topic — from symptom management to best ways to reach the Black and African American community and how to connect people to PD resources.
“The moment that I stepped into the conference room for my first day of training, I knew this would be a life-changing experience.”
- Vanessa Russell Palmer, a person with Parkinson’s and Learning Institute attendee
“Interacting with other African Americans with Parkinson's, neurologists that look like me and sharing our daily challenges was empowering," said Vanessa. Becoming a Parkinson's Foundation Research Advocate has provided me with a new village of support, and I feel empowered to fight this disease every day and to work to bring more information about Parkinson's research and access to care to the African American community.”
Discussing the ethics of research was central to the training, directly addressing medical mistrust and the historical mistreatment the community has experienced in research and care. “Understanding past mistakes is crucial to preventing their recurrence, and it was rewarding to highlight the oversight that is now in place to ensure ethical research practices. Discussing the root causes of medical mistrust is necessary for acknowledgment and progress, fostering a path towards informed and empowered healthcare decisions,” said Dr. Joseph.
Through this training and other initiatives, the Foundation aims to continue addressing the ethical barriers associated with research in its effort to help all people live better with Parkinson’s.
3 Ways You Can Help Improve Health Equity for People with PD
- Participate in research studies. Help diversify research. Before enrolling, review the informed consent form with someone on your care team and let your care team know about the barriers you may have with participating in research. Learn more about Getting Involved in Research.
- Help spread Parkinson’s awareness. Follow us on social media and share stories and news that interest you. The more people know about Parkinson’s, the more they know this disease goes beyond a single demographic. When people know the early signs of Parkinson’s, the sooner they can get diagnosed and have a better quality of life.
- Share your story. Your story may inspire someone who has a similar experience navigating Parkinson’s disease. Submit your story now.
Diversity in research accelerates the rate that researchers can better understand PD and drives better outcomes for the entire PD community. Research advocates return to their communities, activated and inspired to raise awareness and educate their community about the importance of taking part in clinical trials. “Diversifying research gets us one step closer in our efforts to advance treatments and find a cure for Parkinson’s disease.” said Evelyn.
Next, the Parkinson’s Foundation is working to tailor more trainings and local educational events to populations of focus. As with every Foundation event, the focus remains to ensure all people with PD and their families have what they need to manage this disease and live better with Parkinson’s.
Help spread Parkinson's awareness and register to attend a local event today.