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.

MD STARnet

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 ]