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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.

SUBMITTER: Barnard AM 

PROVIDER: S-EPMC7493003 | biostudies-literature | 2020

REPOSITORIES: biostudies-literature

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

Barnard Alison M AM   Riehl Samuel L SL   Willcocks Rebecca J RJ   Walter Glenn A GA   Angell Amber M AM   Vandenborne Krista K  

Journal of neuromuscular diseases 20200101 2


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 (  ...[more]

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