Eighteen participants representing clinicians, scientists, parents, industry, and public health agencies involved in the assessment and treatment of children with Duchenne muscular dystrophy (DMD) from Australia, Canada, the Netherlands, the UK and the USA met in Philadelphia on December 8–9, 2006 to attend a workshop addressing behavioral issues among children and young adults with DMD. The workshop, sponsored by Parent Project Muscular Dystrophy (PPMD–USA), was organized in response to parent and clinician concerns regarding behavior associated with DMD, and its subsequent impact on patient and family quality of life. For the purposes of clarification, in this report the term ‘‘behavior’’ is defined as readily observable external actions and responses, as well as internal affective/emotional states. The aims of the workshop were to (1) evaluate current findings and determine whether characteristic behaviors occur among boys and young men with DMD, (2) examine etiological factors contributing to behavior patterns in DMD, and (3) develop recommendations for research and intervention strategies. DMD is a genetic disorder occurring in approximately one in 3300 live male births. Mutations in the dystrophin gene result in an absence of dystrophin or a non-functional dystrophin protein. The different types and locations of the mutation are highly variable across individuals, and it is
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