Advancing Diversity in Lupus Research Through Community-Based Program, Awards

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Albert Roy, president of the Lupus Research Alliance, elaborates on recent initiatives designed to address the underrepresentation of minorities in lupus research.

In part 2 of HCPLive Rheumatology’s interview with Albert Roy, president and chief executive officer of the Lupus Research Alliance (LRA), he elaborates on the recent initiatives the LRA and Lupus Therapeutics have created to address the underrepresentation of minorities in lupus research and the scientific research profession. Roy also explains the next steps for Project CHANGE and reviews the Diversity in Lupus Research Career Development Award recipients.

This year, the LRA selected 5 outstanding awardees to receive the Lupus Research Career Development Award:

  • Maria Gutierrez-Arcelus, PhD, at Boston’s Children’s Hospital, will advance the understanding of how genetic mutations contribute to clinical heterogeneity among lupus patients.
  • Ali Duarte-Garcia, MD, at the Mayo Clinic, aims to standardize treatment for one of the most dangerous complications of lupus, lupus nephritis, which has the highest mortality rate among the lupus population.
  • Jessica Williams, MD, MPH, at Emory, will focus on an understudied rural population of lupus patients to address persisting health disparities in this group.
  • Ekemini Ogbu, MD, MSc, at Cincinnati Children's Hospital, will advance the understanding of strokes in children with lupus, a frequent and highly dangerous manifestation of pediatric lupus.
  • Shady Younis, PhD, at Stanford University, will investigate the Epstein-Barr virus as a driver of lupus pathogenesis.

Project CHANGE is currently progressing into its implementation phase and the LRA is piloting it in 3 cities: Philadelphia, Atlanta, and Nashville. Each pilot site is forming lupus research collaboratives, involving a wide range of community stakeholders, including people with lupus, hospitals, community-based healthcare providers, medical associations, grassroots community groups, and other leaders.

The goal is to design action plans that address specific barriers to raising awareness and accessing lupus clinical trials among Black people with lupus. Lupus Therapeutics, LRA, and the Project CHANGE steering committee will provide extensive support and mentorship to each location. They have also enlisted research and evaluation experts to track and evaluate the outcomes, challenges, and successes of the Lupus Research Collaboratives so that this approach can be replicated in other communities in the future.

“We are enthusiastic about these initiatives and look forward to updating our audience on the progress and impact of our efforts,” Roy concluded. “We are dedicated to serving people with lupus and striving to make a positive difference in their lives.”

This transcript was edited for clarity.

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