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Albert Roy, president of the Lupus Research Alliance, discusses the efforts his team are making to combat the underrepresentation of minorities in clinical trials as well as the scientific research profession.
The Lupus Research Alliance (LRA) and Lupus Therapeutics have recently launched 2 initiatives to explore diversity in lupus research: Project CHANGE and the Diversity in Lupus Research Career Development Awards. In an interview with HCPLive Rheumatology, Albert Roy, president and chief executive officer of the LRA, discusses the efforts his team are making to combat the underrepresentation of minorities in clinical trials as well as the scientific research profession.
“When we looked at the barriers to new drug development and how they disproportionately affect people with lupus, particularly Black women who are 3 times more likely to get lupus, we realized the importance of addressing diversity in clinical research and trials,” Roy explained. “While there are many variables we can't control, we believe that to ensure new drugs are approved for the appropriate people, clinical trials must be representative of all types of individuals with lupus, especially those who are disproportionately affected.”
Project CHANGE aims to identify 3 locations within the clinical trial infrastructure across North America and launch 3 pilot research initiatives that take a community-driven approach to address systemic challenges contributing to the under-representation of people of color, especially Black people, in lupus clinical trials.
The goal of Project Change is to engage more people in research so they can benefit from new drug developments and improvements in clinical care. As different communities face unique issues and constraints, the LRA is including people living with lupus, their care providers, and other organizations and affiliations that influence those affected by lupus in each community.
The Diversity in Lupus Research Career Development Awards was launched in 2022 to support outstanding underrepresented minority scientists and establish a diverse community of researchers and clinicians in the field of lupus. The career development award provides up to $600,000 over 4 years to early-career scientists to establish a competitive independent research program aligned with LRA's strategic research priorities. The postdoctoral awards offer up to $170,000 over 2 years to promising underrepresented minority research fellows, helping them generate scientific data and transition to independent researchers in areas reflecting our strategic research priorities.
Roy also mentioned an additional, more established program called the Patient Advocates for Lupus Studies (PALS), which is run through Lupus Therapeutics. In response to research showing that non-whites prefer health information from peers, the PALS program pairs people with lupus who want to learn more about trials with peers who have participated in clinical trials and have lupus themselves.
This program has shown significant effectiveness in improving knowledge, perception, intentions, and behaviors among people with lupus to participate in clinical trials.
“Though it's early days and we can't do it alone, we hope to raise awareness, take necessary steps, and have others join us to make a meaningful impact over a relatively short period,” he added. “Each initiative is aimed at making a positive impact on diversity and inclusion in lupus research.”
This transcript was edited for clarity.