Lupus Research Alliance to combat underrepresentation of Black patients in lupus trials
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Key takeaways:
- Project CHANGE will include sites in Atlanta, Nashville and Philadelphia.
- The Lupus Research Alliance announced four recipients of the Career Development Award to Promote Diversity in Lupus Research.
Despite the fact that Black individuals routinely demonstrate the highest prevalence rates for lupus — with frequencies two to three times that of white individuals — they still account for just 14% of clinical trial participants.
To combat this underrepresentation, the Lupus Research Alliance and its clinical affiliate Lupus Therapeutics have announced a pair of initiatives aimed at increasing diversity and representation in lupus research and trials.
The first program, called Project CHANGE, will feature pilot sites at Emory University in Atlanta, Vanderbilt University in Nashville, Tennessee, and the University of Pennsylvania in Philadelphia, each of which will work alongside community stakeholders to create action plans that address barriers to clinical trial access often faced by Black patients. Each participating site is a member of the Lupus Therapeutics Lupus Clinical Investigators Network.
“The potential for great impact in areas with high prevalence of lupus among the local Black community was among the top criteria for site selection for Project CHANGE,” Claire Finney, health equity project lead at Lupus Therapeutics, said in a press release. “By amplifying the voices of those traditionally not engaged in the clinical research process, Project CHANGE will address the critical need for greater diverse representation in lupus clinical trials and give Black lupus warriors greater influence within their community’s health care system.”
According to Lupus Therapeutics, the goal is to increase the number of people overall who are engaged in, and being impacted in a positive way by, research.
“The eventual goal of Project CHANGE is to have more people engaged in research, more people who are ultimately impacted positively by the research that is being conducted by improvements in clinical care and practice,” Edith Williams, PhD, the founding director of the Office of Health Equity Research at the Lupus Research Alliance, and the dean’s associate professor of health equity research at University of Rochester, said in the release. “When certain people are experiencing a greater burden than others, I feel it’s our duty to do something about that. Everyone should have the opportunity to have the best health possible, as we would hope for ourselves and our loved ones.”
In addition to the launch of Project CHANGE, the Lupus Research Alliance recently debuted a new award, called the Postdoctoral Awards to Promote Diversity in Lupus Research. According to the alliance, the new award will provide up to $170,000 over 2 years to researchers in underrepresented groups, with the goal of fostering the development of “outstanding minority scientists and establish a diverse community of researchers and clinicians in the field of lupus.”
The Career Development award is in its second year and provides up to $600,000 over four years.
This year, the recipients of the Career Development Award are Ali Duarte-Garcia, MD, of the Mayo Clinic; Maria Gutierrez-Arcelus, PhD, of Boston Children’s Hospital; Ekemini Ogbu, MD, MSc, of the Cincinnati Children’s Hospital Medical Center; and Jessica Williams, MD, MPH, of Emory University. The winner of the Postdoctoral award is Shady Younis, PhD, of Stanford University.
Reference:
Lupus research alliance announces recipients of 2023 diversity in lupus research awards. https://www.lupusresearch.org/lupus-research-alliance-announces-recipients-of-2023-diversity-in-lupus-research-awards/. July 12, 2023. Accessed July 17, 2023.
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