• Shree K Pandya, Kim A Campbell, Jennifer G Andrews, F John Meaney, and Emma Ciafaloni.
• Department of Neurology, University of Rochester, 601 Elmwood Avenue, Box 673, Rochester, New York, 14642, USA.
• Muscle Nerve. 2016 Feb 1; 53 (2): 191-7.

IntroductionAnecdotal reports from families and care providers suggest a wide variation in services received by individuals with Duchenne/Becker muscular dystrophy (DBMD).MethodsWe documented the type and frequency of health services received by individuals with DBMD using the Muscular Dystrophy Surveillance Tracking and Research Network (MD STARnet) interview data released in June 2012. Interviews with eligible caregivers from 5 sites (Arizona, Colorado, Georgia, Iowa, and western New York) were conducted from April 2007 to March 2012.ResultsTwo hundred ninety-six caregivers (66% of those contactable) participated in the interview. There were significant differences among sites in the specialists seen and services received. Concurrence with cardiac recommendations was higher than that with respiratory recommendations.ConclusionsThe results of this survey support and quantify the anecdotal reports from families and care providers regarding the disparities in services received by individuals with DBMD. It remains to be determined whether these differences affect outcomes.© 2015 Wiley Periodicals, Inc.

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