Non‐white people are thought to be highly likely to develop systemic lupus erythematosus (SLE), however, they remain underrepresented in the SLE clinical trials. The safety and efficacy of drugs may be influenced by ancestry. Hence, ancestrally diverse study populations are necessary to optimize treatments across the full spectrum of patients. Nevertheless, barriers to entry into clinical trials are amplified in non‐white populations.
A conference was held to address these issues in Bethesda, Maryland from October 15th‐16th, 2019, entitled “Increasing Ancestral Diversity in Systemic Lupus Erythematosus Clinical Studies: Overcoming the Barriers.” Participants involved treatment developers from patient advocacy groups, biotechnology, social scientists, lupus clinical trialists, lupus physicians, lupus patients, and the United States government representatives (Centers for Disease Control and Prevention, Food and Drug Administration, National Institutes of Health, and the Office of Minority Health). The organizers purposely involved people having a non‐white ancestry for all of these groups. Decreased participation of non‐white SLE patients in clinical research was evaluated through historical, societal, experiential, and pragmatic perspectives, and several interventional programs to increase non‐white patient participation in SLE and non‐SLE research were described and discussed.
In conclusion, the discussions and presentations highlighted the need for changes at the institutional, societal, research, referring physician, and patient education levels to achieve equitable ancestral representation in SLE clinical studies.