Lupus Foundation of America Awarded Grant to Continue to Increase Black/African American Participation in U.S. Lupus Clinical Trials

The Lupus Foundation of America (LFA) announced today it has been awarded a three-year grant with up to $500,000 in funding per year from the Office of Minority Health (OMH) at the U.S. Department of Health and Human Services to increase participation in lupus clinical trials. The grant builds on the previous success of a 2021 OMH grant awarded to the LFA that led to the creation of the LFA’s Improving Minority Participation and Awareness in Clinical Trials (IMPACT+) Program. With a primary focus on reaching Black/African American women who are disproportionately impacted by lupus, IMPACT+ is designed to reduce barriers to clinical trial enrollment and increase participation in trials. Ultimately, IMPACT+ will contribute to reductions in lupus related health disparities experienced by Black/African lupus population. 

IMPACT+ will aim to identify the most effective communication strategies to enhance interest and participation in clinical research among Black/African American women with lupus. These endeavors will be led using formative evaluation methods to guarantee that the perspective of people with lupus is integrated throughout the curation of clinical trial education and the recruitment process. This includes understanding the priorities and main concerns of Black/African American people with lupus when they are presented with information about clinical research and trials. Building on this approach will provide more insight into effective communication strategies around clinical trial education and recruitment that is both culturally congruent and relevant to Black/African American people living with lupus. 

Additionally, IMPACT+ will expand participation in the LFA’s Lupus Research Action Network (LRAN), a nationwide peer-to-peer clinical trial education and training program. Grant support will help increase participation in LRAN among Black/African American women who will learn more about clinical trials – and how to speak about trial participation – within their own communities and networks to increase enrollment in the LFA’s patient registry, RAY, and ultimately participation in research as a whole. The training is based on the Lupus Conversations Program, which uses the Popular Opinion Leader Model. To date, 102 people with lupus have been trained using this model. 

“Diversity in lupus clinical trials is not just a matter of representation, but a critical factor in ensuring the efficacy and safety of treatments, which is why programs like the Lupus Foundation of America’s IMPACT+ supported by OMH is so important. Each individual brings a unique genetic makeup and lived experience, influencing how they respond to therapies. Embracing diversity in trials is imperative for advancing lupus research and improving outcomes for all,” shared Mary Crimmings, Interim CEO and Senior Vice President for Marketing and Communications at the Lupus Foundation of America.” 

The new grant marks the third time in the past seven years that the LFA has been awarded an OMH grant to address reducing lupus health disparities and improving care. The project period for this new grant is September 30, 2023 to September 29, 2026. 

The LFA has long led the effort to break down barriers that have limited participation in clinical trials. More than a decade ago, the LFA and lupus advocates worked with Congress to establish the OMH National Lupus Training, Outreach & Clinical Trial Program. Since that time, Congress has provided more than $20 million in funding to support programs across the country that are specifically designed to increase minority participation in lupus clinical trials.