Reducing health disparities among individuals with Parkinson Disease

by Stephanie Stemmler • October 18, 2024

Members of the BLAAC PD team at the Spring Into Health health fair held by the Southern Illinois University Edwardsville School of Nursing and the East St. Louis Alumni Chapter of Kappa Alpha Psi Fraternity (left to right): Davis, MiLana Davis, Foster, Norris, Woodhouse, Emmett Norris and Hudson. 

At Washington University in St. Louis School of Medicine, a unique national research collaboration is underway to better understand the health disparities that may exist for underserved individuals diagnosed with Parkinson disease (PD). The study, called the Black and African American Connections to Parkinson Disease (BLAAC PD) study, pairs WashU neurologist and movement disorders specialist Scott Norris, MD, with Erin Foster, PhD, an occupational therapist and rehabilitation researcher in the Program in Occupational Therapy. Dr. Foster specializes in cognitive rehabilitation and increasing community engagement in research and clinical care among people of color with PD.

“The study is part of a broader community engagement initiative to improve diversity and representation in research and improve access to care for underrepresenteda populations,” says Dr. Foster, who directs the Program’s Cognitive and Occupational Performance Laboratory. “Our movement disorders group has been working for several years to raise awareness of PD in the surrounding community.”

PD is a neurodegenerative disorder that affects movement and cognitive function. It is the most common type of movement disorder and the second most common neurodegenerative disorder. The World Health Organization notes that the number of people diagnosed with PD has doubled within the past 25 years, with more than 10 million people impacted globally.

In recent years, there has been a monumental effort to not only find the root causes of PD, but also identify ways to improve care and access to resources. Among the largest is an initiative started by Sergey Brin, co-founder of Google. In 2019, his family foundation established Aligning Science Across Parkinson’s (ASAP) and drove millions of dollars through it to the Michael J. Fox Foundation to fund basic research on PD. ASAP also jump-started the Global Parkinson’s Genetics Program (GP2), a worldwide initiative to collect genetic information from all ethnicities to learn more about PD. GP2 then launched BLAAC PD in the United States to specifically focus on people who identify as Black or African American.

“We are now part of a multi-center study that is enrolling healthy adults who identify as Black or African American and those diagnosed with PD,” says Dr. Foster. “We will be able to add to the growing diversity of the genetic information related to PD and also identify and expand ways to engage with this underrepresented community.”

Funded by a one-year, $100,000 renewable grant, Drs. Foster and Norris are the co-principal investigators at WashU. Key to receiving the grant were Dr. Foster’s extensive regional connections in the PD community and her lab’s growing experience in community-engaged research. She says, “We currently are completing a study funded by the American Parkinson’s Disease Association (APDA) to understand the factors that influence engagement of Black and African Americans with PD in clinical care, research activities and community organizations.”

In that study, Dr. Foster and her team recruited patients, care partners and health-care providers of Black and African American people with PD. She found that there was a lack of awareness of both PD symptoms and community resources. While data are still being analyzed, the local APDA is taking early action, starting a support group for people with PD who identify as Black or African American.

In the BLAAC PD genetic study, Dr. Norris, who serves as Chief of Movement Disorders in the Department of Neurology, conducts neurological exams for participants and oversees the genetic data collection process. His role in the study comes at an exciting time in PD research. Last year, ASAP-funded researchers in Nigeria, Britain and the U.S. announced the discovery of a previously unknown gene variant found almost exclusively in individuals of African descent that can increase the risk of developing PD by 40%.

"I am deeply enthusiastic about the BLAAC PD project, as it enables us to leverage Dr. Foster’s unparalleled collaborative efforts in community engagement,” notes Dr. Norris. “This initiative allows us to expand research to include a historically underrepresented community, aligning with our Movement Disorders Center’s vision to advance the equitable care of diverse patients. By partnering with Dr. Foster’s laboratory and other national centers, we are paving the way for a more inclusive and comprehensive understanding of PD, which is essential for improving health-care outcomes for everyone."

Dr. Foster’s role is to lead efforts to engage with the community to raise awareness about PD and the research study and to recruit participants. Her team includes a diverse group of clinical research coordinators, including Kandace Davis, MS, CCC-SLP, and Dominique Woodhouse, COTA/L, who will help recruit, schedule and collect data from participants, and research nurse coordinator Jessica Hudson, RN, who assists in the Movement Disorders Center.

“From an occupational therapy perspective, I want to do research that benefits all people with PD,” Dr. Foster says. “We need to reduce health disparities and improve health equity. Black individuals with PD are diagnosed later, are not referred as often for rehabilitation, and have poorer health outcomes than white individuals. They don’t derive the benefits of care and community services that are currently available for them. The BLAAC PD study hopes to not only bolster our understanding of potential differences in genetic risk factors among all populations and generate knowledge that will improve treatment for PD, but also prompt us to do better at making sure everyone can access the research opportunities and the care they need.”

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