CLEVELAND — While there's no definitive cause, many experts believe Parkinson's disease may be triggered by genetics and environmental exposures to things like toxins.
But Black people are diagnosed at half the rate as white people. And often by the time it's discovered, Black patients already have severe motor impairment, faster disease progression and higher mortality rates.
The Black and African American Connections Parkinson's disease (BLAAC PD) is an initiative of the Global Parkinson’s Genetics Program (GP2) in a dedicated effort to better understand the genetic basis of Parkinson's disease among underrepresented populations by genotyping more than 150,000 individuals from around the world. Most recently, BLAAC PD contributed to findings of a novel GBA1 variant in individuals with PD and African ancestry, which demonstrated that the variant is prevalent throughout African populations.
With the selection as a BLAAC PD site, UH will receive funding to support study visit costs, supplies, community engagement strategy support, staffing support, and participant incentives. Additionally, as a part of GP2, UH becomes a part of the largest Parkinson's disease genetics consortium in the world.
Camilla Kilbane, MD, neurologist at UH and director of the Parkinson's and Movement Disorder Center, medical director of the Deep Brain Stimulation program, and program director of Movement Disorders says UH will begin recruiting participants beginning in March.
Participants must be Black, over age 21 and submit to a blood test or cheek swab. Participation also includes a $50 gift card. Study sites will be located at UH Cleveland Medical Center downtown as well as sites in Westlake and South Euclid.
This expansion will broaden the geographic diversity of BLAAC PD's locations across the U.S. by increasing representation of the diverse U.S. Black and African American community, and build a base for greater discovery and application of findings across ancestries.
UH was one of four new sites included in this expansion, and joined UT Health in Houston, Washington University in St. Louis, and Medical University of South Carolina in Charleston, SC.
Tremors may be the most common symptom of Parkinson's disease, but motor impairment can also include stiffness, slowness and changes in gait.
However, other symptoms may appear much earlier. The list includes non-motor symptoms such as depression, fatigue and constipation, but also Rapid Eye Movement Sleep Disorder, where the person may make simple hand gestures during sleep or have violent thrashing, punching and kicking episodes.
Also, losing the sense of smell happens to more than 90% of patients sometimes years before other symptoms appear.