Abstract

Addressing the Challenges of Clinical Research Participation Among Populations Disproportionately Impacted by Lupus

The Lupus Research Alliance (LRA) and the National Minority Quality Forum (NMQF) formed the Lupus Multi-Cultural Engagement Partnership (Lupus MCEP) in 2017 to address the causes and potential solutions for the lack of inclusion in clinical trials of populations that are at greatest risk for and have the highest prevalence of Systemic Lupus Erythematosus (SLE or lupus). The inaugural Lupus MCEP meeting featured presentations from researchers, clinicians, people with lupus, and patient advocates who described the complexity of the Lupus MCEP charge through their particular lenses.

The recommendations in this report are the basis of a road map to help lead us toward representative participation in research and ultimately better treatments for people with lupus. Lupus is a multi-faceted disease that requires an equally diverse approach to research and treatment. This includes collaboration from many sectors beyond the typical groups involved in lupus. The goal of this report is to help foster that collaboration and to encourage and engage groups interested in the health of populations disproportionately impacted by lupus to take action.

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