Black and African American Connections to Parkinson’s Disease (BLAAC PD) study builds to six sites with the inclusion of Louisiana State University and University of Florida
Collaborative research effort from the Aligning Science Across Parkinson’s initiative and The Michael J. Fox Foundation for Parkinson’s Research supports global program to grow understanding of genetic architecture of Parkinson’s disease
Deeper understanding of population-specific pathological variants may support development of novel interventions and/or application of therapies already in testing
NEW YORK (February 27, 2023) — The Black and African American Connections to Parkinson’s Disease (BLAAC PD) study announces the addition of two clinical site partners — Louisiana State University and University of Florida — extending this effort to six locations and growing its partnership with populations traditionally underrepresented in research to better understand the genetic architecture of Parkinson’s disease. BLAAC PD is a study of the Global Parkinson’s Genetics Program (GP2), a resource of the Aligning Science Across Parkinson’s (ASAP) initiative that is executed by The Michael J. Fox Foundation for Parkinson’s Research (MJFF).
“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. 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,” said Ashley Rawls, MD, MS, clinical assistant professor at the University of Florida College of Medicine and BLAAC PD site principal investigator.
Since its launch in 2021, BLAAC PD has also enrolled participants at Kaiser Permanente Mid-Atlantic, Rush University, University of Alabama at Birmingham, and University of Chicago. The study is recruiting volunteers from the Black or African American community — people with Parkinson’s disease and people without the disease or a family history of Parkinson’s (control participants). Participants contribute a one-time blood or saliva sample for DNA testing and clinical data around demographics and medical/family history. This aims to better understand the unique differences that present between ethnic heritages.
Interested volunteers can learn more and connect with a site at www.blaacpd.org
Data and samples from BLAAC PD are shared with GP2, which is gathering and analyzing such resources from over 150 cohorts from more than 50 countries. De-identified data is shared with the global research community to speed findings around population-specific or overlapping genetic traits related to PD. These findings could identify novel pathological pathways with potential for therapeutic intervention. Alternatively, they could support application of therapies already in development to additional populations.
“Genetic understanding unlocks a door that scientists walk through toward cures,” said MJFF Director of Clinical Operations Alyssa O’Grady. “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.”
Complementary Efforts Aim to Understand and Treat Parkinson’s Disease in the Black and African American Community
While genetics research and cutting-edge technologies have advanced Parkinson’s disease understanding in recent decades, most studies have only included people of European descent. The GP2 study is addressing that challenge. The Michael J. Fox Foundation supports additional efforts — some feeding to GP2 — to explore population-specific genetics, clinical disease experience, and access to care. In parallel, the Foundation works toward inclusive research practices, integrating varied patient perspectives and priorities and enrolling participants of diverse backgrounds into clinical studies.
“The moment you hear ‘You have Parkinson’s disease,’ it can come as a shock and bring many questions. 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,” said Dionne Phillips, a BLAAC PD volunteer who lives in Chicago and was diagnosed with PD at age 39. “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.”
About Aligning Science Across Parkinson’s Disease (ASAP)
The Aligning Science Across Parkinson’s (ASAP) initiative is a coordinated research initiative to advance targeted basic research for Parkinson’s disease. ASAP is devoted to accelerating the pace of discovery and informing the path to a cure for Parkinson’s disease through collaboration, research-enabling resources, and data sharing. Led by Nobel Laureate Dr. Randy Schekman and Dr. Ekemini Riley, ASAP is managed by the Coalition for Aligning Science and is working with The Michael J. Fox Foundation to implement its programs. The initiative was incubated at the Milken Institute Center for Strategic Philanthropy with support from the Sergey Brin Family Foundation. For more information, visit www.parkinsonsroadmap.org.
About The Michael J. Fox Foundation for Parkinson’s Research (MJFF)
As the world's largest nonprofit funder of Parkinson's research, The Michael J. Fox Foundation is dedicated to accelerating a cure for Parkinson's disease and improved therapies for those living with the condition today. The Foundation pursues its goals through an aggressively funded, highly targeted research program coupled with active global engagement of scientists, Parkinson's patients, business leaders, clinical trial participants, donors and volunteers. In addition to funding $1.75 billion in research to date, the Foundation has fundamentally altered the trajectory of progress toward a cure. Operating at the hub of worldwide Parkinson's research, the Foundation forges groundbreaking collaborations with industry leaders, academic scientists and government research funders; creates a robust open- access data set and biosample library to speed scientific breakthroughs and treatment with its landmark clinical study, PPMI; increases the flow of participants into Parkinson's disease clinical trials with its online tool, Fox Trial Finder; promotes Parkinson's awareness through high-profile advocacy, events and outreach; and coordinates the grassroots involvement of thousands of Team Fox members around the world. For more information, visit us at www.michaeljfox.org, Facebook, Twitter, LinkedIn.
The Michael J. Fox Foundation