Genetics study in Black, African American people expands

BLAAC PD adds two university sites in the US, now totals six

Steve Bryson, PhD avatar

by Steve Bryson, PhD |

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A person shouts into a megaphone to make an announcement.

The Black and African American Connections to Parkinson’s Disease (BLAAC PD) study, a research effort to understand the genetic complexities of Parkinson’s disease among traditionally underrepresented people, has now expanded to six clinical sites.

A better understanding of genetic variants associated with the neurological condition specific to this population may support the development of new therapies or the use of those already undergoing testing.

Louisiana State University and the University of Florida are the new site additions, joining the University of Alabama at Birmingham, Kaiser Permanente Mid-Atlantic, in Maryland, and Rush University and the University of Chicago, both in Illinois.

“The BLAAC PD study is an opportunity for Black and African American people to participate in the pursuit of cures for Parkinson’s — the fastest growing neurological disease — for themselves, their children and their community,” Ashley Rawls, MD, said in a press release. Rawls is an assistant professor at the University of Florida College of Medicine and BLAAC PD’s site principal investigator.

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“We are proud to join as a clinical site and to contribute to a global initiative that is looking both for what makes a population unique and for what is shared,” Rawls added.

Parkinson’s disease is a neurological condition marked by movement problems and a progressive loss of coordination. Both environmental and genetic factors are thought to play a role in Parkinson’s development.

“The moment you hear ‘You have Parkinson’s disease,’ it can come as a shock and bring many questions,” said Dionne Phillips, a Parkinson’s patient who lives in Chicago and who is participating in the BLAAC PD study.

“For Black and African American people and families, it can feel isolating when you don’t think others in your community understand or live with the disease,” Phillips said, adding that “it’s important for everyone to get involved in research toward better understanding of the disease and ultimately, a cure, not just for our community living with it today but those who may be diagnosed tomorrow.”

BLAAC PD origins

Launched in 2021, the BLAAC PD study is part of the Global Parkinson’s Genetics Program (GP2), designed to address the fact that genetics research in Parkinson’s has focused mainly on people of European descent.

The study intends to shed light on the unique differences and commonalities between genetic heritages among people with Parkinson’s. It is recruiting volunteers from the Black or African American community, ages 18 and older, with or without Parkinson’s, as well those with a family history of Parkinson’s.

In a single visit, a one-time blood or saliva sample will be collected for DNA testing alongside demographics and medical and family history. While participants will be compensated, no medications will be provided, there is no cost to join the study, and health insurance will not be charged.

Samples and data from BLAAC PD will be shared with the GP2 research community, which is currently analyzing data from more than 150 groups across more than 50 countries.

To ensure participant privacy, only de-identified data will be shared with the global research community, with the goal of facilitating the discovery of both overlapping or population-specific variants associated with Parkinson’s genetics.

The ASAP initiative

GP2 is part of the Aligning Science Across Parkinson’s (ASAP) initiative, a program to promote basic research into Parkinson’s disease.

Led by Nobel Laureate Randy Schekman, PhD, at the University of California, Berkeley, and Ekemini Riley, PhD, at the Milken Institute, also based in California, ASAP is working with the Michael J. Fox Foundation for Parkinson’s Research (MJFF) to execute its programs.

“Genetic understanding unlocks a door that scientists walk through toward cures,” said Alyssa O’Grady, MJFF’s director of clinical operations. “We are grateful to the participant and clinical site partners building this study to learn more about Parkinson’s-linked genetic changes in Black and African American populations toward better treatments for all.”