Characterization of individuals with selected muscular dystrophies from the expanded pilot of the Muscular Dystrophy Surveillance, Tracking and Research Network (MD STARnet) in the United States.

Individuals were mostly non-Hispanic and white. Median ages ranged from 9.2 to 66.0 years. Most (98%) had health insurance. The proportion of individuals who were disabled or unable to work increased with age (range: 8.6-46.4%). People with limb-girdle MD aged ≥18 years were more likely to be nonambulatory (range: 24.5-44.7%). The percentages of individuals with documented clinical interventions during the surveillance period were low. The most common cause of death was respiratory causes (46.3-57.1%); an ICD-10 code for MD (G71.1 or G71.0) was reported for nearly one-half. Our findings show wide variability in sociodemographic and clinical characteristics across MDs.