Grant to Parkinson’s Foundation to expand genetic research access
Partnership with Morehouse medical school aims to boost African American participation
A grant from the Robert W. Woodruff Foundation to the Parkinson’s Foundation will expand PD GENEration genetic testing and counseling opportunities for African Americans with Parkinson’s disease in Georgia.
Through a partnership with the Morehouse School of Medicine, the funding also will support efforts to boost participation in educational research.
“We are grateful for the generosity of the Woodruff Foundation in helping us expand PD GENEration and provide further support to Black and African American people in the Parkinson’s disease community,” James Beck, PhD, the foundation’s chief scientific officer, said in a press release. “PD GENEration is designed to be inclusive and accessible to all populations and this grant allows us to elevate the study’s reach through our partnership with Morehouse.”
The Parkinson’s Foundation-sponsored PD GENEration: Mapping the Future of Parkinson’s Disease (NCT04057794) seeks to make free genetic testing and follow-up counseling more widely available. The goal is to provide services to 15,000 patients. There are currently enrollees from all 50 states, Puerto Rico, and the Dominican Republic.
Study data, analyzed in real time, would help scientists learn more about the effect of genetics on Parkinson’s and whether individual patients qualify for clinical trials. Of the 7,500 people enrolled as of January, 14% were found to have a genetic link to Parkinson’s. That’s markedly higher than the long-standing estimate that about 10% with the disorder have a Parkinson’s-associated mutation.
Growing diversity in genetic research
A key objective is to include people of diverse racial and ethnic backgrounds, since minorities have historically been underrepresented in clinical studies and biomedical research. Their absence renders data less generalizable, making it challenging for clinicians to guide patients of non-European descent.
To address that, the Parkinson’s Foundation has taken steps to improve diversity, including collaborating with clinicians in historically marginalized communities and providing counseling services in English and Spanish. As of early this year, about 22% of PD GENEration participants were from historically excluded racial and ethnic communities.
The collaboration with Atlanta, Georgia-based Morehouse aims to continue these efforts. Along with providing no-cost genetic testing and counseling, and determining clinical trial eligibility, the initiative will offer educational seminars to help patients understand the role of genes in the progressive neurodegenerative disease.
“By making genetic testing, counseling, and education more accessible to Black and African American people with PD through this partnership, we hope to significantly improve clinical outcomes and increase research participation,” said Chantale Branson, MD, Morehouse Medical School’s first movement disorder specialist.
More information about PD GENEration is available by calling 1-800-473-4636) or sending an email to [email protected]. Patients can directly enroll in the Morehouse initiative or email [email protected].
“The Woodruff Foundation is pleased to support the Parkinson’s Foundation and Morehouse School of Medicine as they join forces to extend promising genetic research to greater numbers of Parkinson’s patients in Georgia,” said Russ Hardin, the foundation’s president.
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