Centers for Disease Control and Prevention (CDC) research has indicated that individuals affected by the most severe form of muscular dystrophy—Duchenne muscular dystrophy—experience a significant delay in receiving an accurate diagnosis. Most of them are not diagnosed until 5 years of age. Despite improvements in diagnostic testing, this figure has not changed in 20 years1. Delays in diagnosis may mean a delay in accessing care, and may have practical implications for the family.
CDC has funded development of the only early diagnosis tool designed specifically for identifying muscle weakness among children. The agency’s muscular dystrophy program collaborates with partners to create tools to help to improve the lives of people with muscular dystrophy. To this end, CDC has funded Parent Project Muscular Dystrophy to establish the National Task Force for the Early Identification of Neuromuscular Disorders. The result of the task force’s work is www.childmuscleweakness.org, a Web-based tool to help primary care clinicians, therapists, and other specialists in the early diagnosis of child muscle weakness. This tool is designed to decrease the time between initial signs and first diagnosis, and improve early intervention and access to care.
The core content of this Web tool has been endorsed by the American Academy of Pediatrics. The site features a video library of clips showing specific neuromuscular features. The site also includes a video library of clips showing specific neuromuscular features and resources for testing and referral.
- Prevalence of Duchenne/Becker muscular dystrophy among makes aged 5-24 years-four states, 2007 Morbidity and Mortality Weekly Report, 2009 Oct 16;58(40);1119-22
- Centers for Disease Control and Prevention
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