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

J Neuromuscul Dis. 2020;7(2):167-173. doi: 10.3233/JND-190447.

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.

MeSH terms

  • Bibliometrics
  • Black or African American / statistics & numerical data*
  • Healthcare Disparities
  • Hispanic or Latino / statistics & numerical data*
  • Humans
  • Minority Health
  • Muscular Dystrophy, Duchenne*
  • Observational Studies as Topic / statistics & numerical data*
  • Patient Selection*
  • White People / statistics & numerical data*