Muscular Dystrophy Articles and Key Findings


Key Findings

Families Experience Continued Delay in Getting a Diagnosis of Duchenne Muscular Dystrophy
Researchers found that it takes 2.2 years for families without a family history of Duchenne muscular dystrophy (DMD) to receive a diagnosis of DMD.

Mental health and DBMD
Mental health concerns among males with Duchenne and Becker muscular dystrophy.

DBMD prevalence by race/ethnicity
Proportion of Duchenne and Becker muscular dystrophy in the United States among certain races and ethnicities.

Featured Articles

New Tool for Parents Helps Address Concerns
A tool to help parents concerned about their child’s physical development.

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The following selected articles are from the Muscular Dystrophy Surveillance, Tracking and Research Network (MD STARnet). To read more about MD STARnet, click here.

A Review of MD STARnet’s Research Contributions to Pediatric-Onset Dystropinpathy in the United States; 2002–2017.
Journal of Child Neurology, 2019 Jan;34(1):44-53.
Sahay K, Smith T, Conway K, et al.
[Read full article]

Diagnostic Accuracy of Phenotype Classification in Duchenne and Becker Muscular Dystrophy Using Medical Record Data.
Journal of Neuromuscular Diseases, 2018 Oct;5(4):481–495.
Andrews JG, Lamb M, Conway K, et al.
[Read full article]

Health Care Transition Experiences of Males with Childhood-onset Duchenne and Becker Muscular Dystrophy: Findings from the Muscular Dystrophy Surveillance Tracking and Research Network (MD STARnet) Health Care Transitions and Other Life Experiences Survey.
PLOS Currents: Muscular Dystrophy. 2018 Aug 21 (epub).
Paramsothy P, Herron A, Lamb M, et al.
[Read full article]

Health Profile of a Cohort of Adults with Duchenne Muscular Dystrophy.
Muscle Nerve. 2018 Aug;58(2):219-223.
Pandya S, James KA, Westfield C, et al.
[Read full article]

Prevalence of Duchenne and Becker Muscular Dystrophies in the United States
Pediatrics, 2015 March; 135(3):2014-44
Romitti P, Zhu Y, Puzhankara S, et al.
[Read full article] [Read key findings]

Delayed Diagnosis in Duchenne Muscular Dystrophy: Data from the Muscular Dystrophy Surveillance, Tracking, and Research Network (MD STARnet)
Journal of Pediatrics, 2009 Sep;155(3):380-5
Ciafaloni E, Fox DJ, Pandya S, et al.
[Read summary]

Care Considerations

These articles outline the latest in clinical care to help families and healthcare professionals manage Duchenne muscular dystrophy.

Diagnosis and management of Duchenne muscular dystrophy, part 1: Diagnosis, neuromuscular, rehabilitation, endocrine, and gastrointestinal and nutritional management [PDF – 509 KB]

Diagnosis and management of Duchenne muscular dystrophy, part 2: Respiratory, cardiac, bone health, and orthopaedic management [PDF – 563 KB]

Diagnosis and management of Duchenne muscular dystrophy, part 3: Primary care, emergency management, psychosocial care, and transitions of care across the lifespan [PDF – 267 KB ]