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J Clin Med. 2019 Aug 17;8(8). pii: E1245. doi: 10.3390/jcm8081245.

The State of Lupus Clinical Trials: Minority Participation Needed.

Author information

1
UNC Thurston Arthritis Research Center, Chapel Hill, NC 27599, USA. szsheikh@email.unc.edu.
2
Department of Medicine, Division of Rheumatology, Allergy and Immunology, University of North Carolina at Chapel Hill School of Medicine, Chapel Hill, NC 27599, USA. szsheikh@email.unc.edu.
3
KDH Research and Communication, Atlanta, GA 30361, USA.
4
Strategic Initiatives, American College of Rheumatology, Atlanta, GA 30319, USA.

Abstract

In the United States, the reported prevalence of lupus is 100,000 to 500,000 patients. Lupus disproportionately affects minority populations, including African Americans and Latinos, and the associated health disparities are substantial. Women are at a higher risk of lupus than men and lupus prevalence is the highest in African Americans and Latinos compared to non-Hispanic whites. African Americans and Latinos also have increased disease symptom severity, experience more lupus-related complications, and have a two- to three-fold mortality rate compared to non-Hispanic Whites. Lupus clinical trials offer opportunities for quality care and can result in new treatment options, but African Americans and Latinos are underrepresented in clinical trials because of substantial patient- and provider-side barriers. In conjunction with the limited knowledge of clinical trials that potential participants may have, the healthcare staff approaching participants have limited time to adequately educate and explain the aspects of clinical trials. Indeed, ninety percent of clinical trials fail to meet their recruitment goals on time, so a multi-faceted approach is necessary to address the issue of low minority participation in clinical trials.

KEYWORDS:

clinical trial disparities; clinical trial diversity; clinical trials; lupus; lupus health disparities

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