BLAAC PD Annual Meeting participants and study team members, July 30, 2026.
“Ultimately, inclusion is not simply about having a more representative study population. It is about making the science better,” reflected Scott Norris, MD, a movement disorders neurologist and BLAAC PD principal investigator at Washington University School of Medicine in St. Louis. “When we listen to people whose experiences have historically been less visible in Parkinson’s research, we have the opportunity to discover new dimensions of the disease and ask questions we might otherwise overlook.”
At the 2026 Black and African American Connections to Parkinson’s Disease (BLAAC PD) Annual Meeting in July, study staff from across the country came together to share new analyses, compare what they are learning in their communities and explore what becomes possible when Parkinson’s research includes people who historically have been missing from it.
BLAAC PD was launched to address a significant gap in Parkinson’s research. Historically, Parkinson’s genetics studies have largely included people of European ancestry, limiting researchers’ ability to understand how the disease may differ – or be similar – across populations. As an initiative of the Global Parkinson’s Genetics Program (GP2), BLAAC PD is building a cohort of Black and African American participants to help researchers develop a more complete, globally relevant understanding of Parkinson’s disease. Data from the study have already contributed to the first major discovery of a novel Parkinson’s risk factor in people of African ancestry.
This year’s meeting showed how that work is continuing to evolve. As the data grow, researchers are uncovering new scientific insights while site teams are learning more about what it takes to build meaningful, lasting partnerships with communities.
A More Complete Genetic Picture
One of the clearest signs of BLAAC PD’s impact is what researchers are beginning to see in the genetic data. Earlier research identified an African ancestry-associated GBA1 variant linked to increased Parkinson’s risk, a discovery that BLAAC PD data helped make possible. At this year’s meeting, researchers showed how larger datasets are beginning to reveal a richer picture of Parkinson’s genetics.
In one analysis presented at the meeting, researchers showed how genetic risk for Parkinson’s can look different across populations. The African ancestry-associated GBA1 variant stood out as an important risk factor in African and African admixed populations, while a common LRRK2 risk variant in European populations was virtually absent. Findings like these demonstrate why studying Parkinson’s genetics across diverse populations is essential to understanding the disease more fully.
Understanding both the similarities and differences across populations can help researchers build a stronger scientific foundation for future treatments, diagnostics and more personalized approaches to Parkinson’s care.
Looking Beyond Genetics
BLAAC PD is becoming a resource for understanding much more than genetics alone.
Researchers presented early analyses of cognition, including data from the Montreal Cognitive Assessment (MoCA). Applying different scoring approaches substantially changed the proportion of participants considered cognitively impaired, highlighting the importance of considering factors such as education and socioeconomic status when interpreting cognitive test results.
The team is also collecting information about occupation and environmental exposures. Investigators discussed how these data could eventually help researchers explore questions about pesticides and other exposures alongside genetics, disease onset and progression. Hundreds of BLAAC PD participants have already contributed occupational information, creating opportunities to study factors that historically have been difficult to examine in diverse Parkinson’s cohorts.
More data are on the way. BLAAC PD is actively contributing genetic and clinical data to the broader Global Parkinson’s Genetics Program (GP2), with an expanded set of BLAAC PD clinical data anticipated in an upcoming GP2 data release.
Research Built on Relationships
The science presented throughout the day was closely connected to the idea of trust. When site teams shared what they have learned about engaging people in Parkinson’s research, there was agreement across the board that relationships matter.
For Ellen Nyasulu Chiwoni, a clinical research coordinator with the Washington University BLAAC PD team, those experiences have also broadened the definition of successful community engagement.
“The impact of our work in the community cannot be measured only by the number of people who ultimately enroll in BLAAC PD. Sometimes an important outcome is simply increasing awareness, helping someone recognize that what they are experiencing may warrant a conversation with a healthcare provider, or helping them know where to go next.”
Learning What Works
BLAAC PD is also putting those lessons to the test. Through the BLAAC PD Demonstration Project, study staff are testing new ways to reach Black and African American people with Parkinson’s who may not already be connected to participating movement disorder clinics. After approximately 18 months, the results reinforce that there is no one-size-fits-all approach.
Primary care outreach has shown promise in Houston, while digital advertising has performed well in Shreveport. In Missouri, preliminary results showed that outreach materials featuring the local institution alongside BLAAC PD branding drove more people to complete the study eligibility questionnaire.
The team is now taking lessons from the Demonstration Project to additional BLAAC PD sites, with the longer-term goal of sharing what they learn with the broader Parkinson’s research community.
What Comes Next
As BLAAC PD looks ahead, researchers are continuing to ask new questions of the data participants have helped build.
The genetic findings discussed at this year’s meeting are only one part of that future. Researchers are working to understand which genetic risk factors are shared across populations, which may differ by ancestry, and how genetics may interact with cognition, environment and other factors that shape an individual’s experience with Parkinson’s.
And BLAAC PD isn’t working in isolation. As part of GP2, participants are contributing to a worldwide research effort aimed at ensuring Parkinson’s science reflects and benefits people across populations. The knowledge generated through BLAAC PD is expanding the scientific foundation on which future Parkinson’s research and approaches to care can be built.
Every data point begins with someone choosing to participate. As those data continue to be studied and combined with larger research efforts, each contribution can help researchers ask questions that were not possible before.
BLAAC PD is helping change not only who is represented in Parkinson’s research, but what researchers can learn because they are there.
You can help us learn more about Parkinson’s disease. See if you are eligible to participate in BLAAC PD at BLAACPD.org.