Characterizing Enrollment in Observational Studies of Duchenne Muscular Dystrophy by Race and Ethnicity

Abstract

Observational research benefits from inclusion of diverse cohorts. To characterize racial and ethnic diversity in observational and natural history research studies of Duchenne muscular dystrophy (DMD), highly cited and influential observational studies were identified. Fourteen United States-based articles were included. All studies cited >70% White participants with the majority having few racial minority participants. Enrollment of Black/African American individuals was particularly limited (<5% in all but one study), and Hispanic/Latino participants ranged from 3.3- 26.5% of cohorts. These results suggest a need for effective strategies to recruit, enroll, and retain racially and ethnically diverse populations into observational research in DMD.

Keywords: Bibliometrics; Healthcare Disparities; Minority Health; Muscular dystrophies; Observational Studies.

Conflict of interest statement

Conflicts of Interest

Dr. Alison M Barnard has no conflicts of interest to report.

Mr. Samuel L Riehl has no conflicts of interest to report.

Dr. Rebecca J Willcocks has no conflicts of interest to report.

Dr. Glenn A Walter receives grant support from the NIH for R01 AR056973. Dr Walter has also received funding from Sarepta Therapeutics, Italfarmaco SPA, and Catabasis Pharmaceuticals through grant awards to the University of Florida unrelated to this study.

Dr. Amber M Angell has no conflicts of interest to report.

Dr. Krista Vandenborne receives grant support from the NIH for R01 AR056973. Dr. Vandenborne has also received funding from Sarepta Therapeutics, ltalfarmaco SPA, Summit Therapeutics, Catabasis Pharmaceuticals, Pfizer Inc., ldera Pharmaceuticals, BMS, and Eli Lilly through grant awards to the University of Florida unrelated to this study.