BACKGROUND: Therapeutic trials are critical to improving outcomes for 
individuals diagnosed with Duchenne muscular dystrophy (DMD). Understanding 
predictors of clinical trial participation could maximize enrollment.
METHODS: Data from six sites (Colorado, Iowa, Piedmont region North Carolina, 
South Carolina, Utah, and western New York) of the Muscular Dystrophy 
Surveillance, Tracking, and Research Network (MD STARnet) were analyzed. 
Clinical trial participation and individual-level clinical and sociodemographic 
characteristics were obtained from medical records for the 2000-2015 calendar 
years. County-level characteristics were determined from linkage of the most 
recent county of residence identified from medical records and publicly 
available federal datasets. Fisher's exact and Wilcoxon two-sample tests were 
used with statistical significance set at one-sided p-value (<0.05) based on the 
hypothesis that nonparticipants had fewer resources.
RESULTS: Clinical trial participation was identified among 17.9% (MD STARnet 
site: 3.7-27.3%) of 358 individuals with DMD. Corticosteroids, tadalafil, and 
ataluren (PTC124) were the most common trial medications recorded. Fewer 
non-Hispanic blacks or Hispanics than non-Hispanic whites participated in 
clinical trials. Trial participants tended to reside in counties with lower 
percentages of non-Hispanic blacks. Conclusion: Understanding characteristics 
associated with clinical trial participation is critical for identifying 
participation barriers and generalizability of trial results. MD STARnet is 
uniquely able to track clinical trial participation through surveillance and 
describe patterns of participation.