4 new US sites added to global Parkinson’s genetics study
BLAAC PD study seeks to understand the disease in diverse Black community
University Hospitals (UH) healthcare system in Cleveland, Ohio, has been named one of four new sites for a Global Parkinson’s Genetics Program (GP2) study that seeks to better understand Parkinson’s disease in Black people, with a focus on the disorder’s genetic basis.
Improved knowledge of genetic variants linked to the progressive neurodegenerative disorder in this population could support the development of new treatments or the use of those being tested.
The other new sites in the Black and African American Connections to Parkinson’s Disease (BLAAC PD) study, which opened in 2021, include UT Health in Houston, Texas; Washington University in St. Louis, Missouri; and the Medical University of South Carolina in Charleston, South Carolina.
University Hospitals joins 6 other sites previously added in US
Last March, the study added Louisiana State University and the University of Florida, joining the University of Alabama at Birmingham, Kaiser Permanente Mid-Atlantic, in Maryland, and two Illinois locations: Rush University and the University of Chicago.
The expansions broaden the BLAAC PD study’s geographic reach and heighten representation of the diverse Black community in the U.S. They also build a foundation for greater discovery and application of findings across ancestries.
“We are happy to be a part of the network of BLAAC PD sites across the U.S. and the GP2 global network in order to expand understanding of Parkinson’s disease within the Black and African American communities,” Camilla Kilbane, MD, director of UH Parkinson’s and Movement Disorder Center, and medical director of the hospital’s deep brain stimulation program, said in a press release.
“We look forward to continuing to contribute to a more holistic, global understanding of Parkinson’s Disease by increasing representation in our study populations and learning more about gene changes that may cause the disease.”
Now part of the world’s largest Parkinson’s genetics consortium, UH will receive funding for study visit expenses, supplies, community engagement strategy support, staffing support, and participant incentives.
Environmental as well as genetic factors are believed to contribute to the development of Parkinson’s, a disease marked by movement difficulties and a progressive loss of coordination. GP2 seeks to address the fact that genetics research in Parkinson’s has primarily focused on individuals of European descent. The study is part of the Aligning Science Across Parkinson’s initiative, which aims to foster collaboration and resources to understand the underlying causes of Parkinson’s.
Parkinson’s estimated to affect 23 out of every 100,000 Black people in US
In the U.S., the incidence of Parkinson’s in Black people is estimated to be 23 of every 100,000, compared with 54 per 100,000 white people. The prevalence of the disorder is 50% lower in Black compared with white individuals. However, it is possible that this represents an underestimation of the true prevalence and incidence rate of Parkinson’s among these racial groups.
Factors contributing to the disparities could include genetic or biological differences as well as systemic and structural healthcare factors such as the under-reporting of symptoms, patient mistrust in healthcare, and access to health insurance.
The BLAAC PD study intends to uncover the commonalities and differences between genetic lineages among Parkinson’s patients. It is seeking adult participants from the Black or African American community, including patients and those without Parkinson’s. Volunteers with a family history of Parkinson’s are also eligible.
The study calls for blood or saliva samples to be collected one time from individuals in a single visit, along with demographics and medical and family histories. The samples will undergo DNA testing and be shared, along with BLAAC PD data, with the GP2 research community.
For the sake of participant privacy, only de-identified data will be shared. The goal of sharing is to facilitate the discovery of overlapping as well as population-specific variants linked to Parkinson’s.
Study participants will be compensated but no medications will be provided. There is no cost to join BLAAC PD and also no charge to health insurance.
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