Open AccessCharacterizing Enrollment in Observational Studies of Duchenne Muscular Dystrophy by Race and Ethnicity
Author(s) -
Alison M. Barnard,
Samuel L. Riehl,
Rebecca J. Willcocks,
Glenn A. Walter,
Amber M. Angell,
Krista Vandenborne
Publication year - 2020
Publication title -
journal of neuromuscular diseases
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.366
H-Index - 23
eISSN - 2214-3602
pISSN - 2214-3599
DOI - 10.3233/jnd-190447
Subject(s) - observational study , ethnic group , medicine , duchenne muscular dystrophy , race (biology) , inclusion (mineral) , ethnically diverse , diversity (politics) , demography , gerontology , family medicine , psychology , population , environmental health , political science , biology , botany , social psychology , sociology , law
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.