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Articles & Key Findings

Mental health and DBMD
Mental health concerns among males with Duchenne and Becker muscular dystrophy.
(Published: June 4, 2015)

DBMD prevalence by race/ethnicity
Proportion of Duchenne and Becker muscular dystrophy in the United States among certain races and ethnicities.
(Published: February 17, 2015)

Conor’s Story
Conor actively advocates for people with disabilities. Learn more about his story living with Duchenne muscular dystrophy.
(Published: August 31, 2017)

New Tool for Parents Helps Address Concerns
A tool to help parents concerned about their child’s physical development.
(Published: February 23, 2016)

Muscular Dystrophy: Kevin’s Story
Read about Kevin, a man with muscular dystrophy who doesn’t let the condition define him.
(Published: February 11, 2013)

Publications

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.

Perceived Quality of Life among Caregivers of Children with a Childhood-Onset Dystrophinopathy: a double ABCX Model of Caregiver Stressors and Perceived Resources
Health Quality of Life Outcomes, 2017 Feb 10;15(1):33
Frishman N, Conway KC, Andrews J, et al.
[Read summary]

Respiratory Care Received by Individuals with Duchenne Muscular Dystrophy (DMD) from 2000 – 2011
Respiratory Care, 2016 Oct;61(10):1349-59
Andrews JG, Soim A, Pandya S, et al.
[Read summary]

Corticosteriod Treatment and Growth Patterns in Ambulatory Males with Duchenne Muscular Dystrophy
Journal of Pediatrics, 2016 Jun;173:207-213.e3
Lamb MM, West NA, Ouyang L, et al.
[Read full article]

When you click “Read summary”

The link will take you to a short summary of the article. The full article is available to subscribers of the publication’s service.

Age at First Signs or Symptoms Predicts Age at Loss of Ambulation in Duchenne and Becker Muscular Dystrophy: Data from the MD STARnet
Journal of Pediatric Rehabilitation Medicine, 2016 Feb 27;9(1):5-11
Ciafaloni E, Kumar A, Liu K, et al.
[Read summary]

Neurobehavioral Concerns among Males with Dystrophinopathy Using Population-Based Surveillance Data from the Muscular Dystrophy Surveillance, Tracking, and Research Network
Journal of Developmental and Behavioral Pediatrics, 2015 Jul-Aug;36(6):455-63
K Caspers Conway, Mathews KD, Paramsothy P, et al.
[Read full article] [Read key findings]

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]

Corticosteroid Treatments in Males with Duchenne Muscular Dystrophy: Treatment Duration and Time to Loss of Ambulation
Journal of Child Neurology, 2014 Nov;30(10):1275-80
S Kim, Campbell KA, Fox DJ, et al.
[Read full article]

Complimentary and Alternative Medicine for Duchenne and Becker Muscular Dystrophies: Characteristics of Users and Caregivers
Pediatric Neurology, 2014 Jul;51(1):71-7
Zhu Y, Romitti PA, Conway KM, et al.
[Read full article]

Sibling Concordance for Clinical Features of Duchenne and Becker Muscular Dystrophy
Muscle Nerve, 2014 Jun;49(6):814-21
Pettygrove S, Lu Z, Andrews JG, et al.
[Read full article]

Correlates of Care for Young Men with Duchenne and Becker Muscular Dystrophy
Muscle Nerve, 2014 Jan;49(1):21-5
Andrews JG, Davis MF, and Meaney FJ.
[Read summary]

Patterns of Growth in Ambulatory Males with Duchenne Muscular Dystrophy
Journal of Pediatrics, 2013 Dec;163(6):1759-1763.e1
West NA, Yang ML, Weitzenkamp DA, et al.
[Read summary]

Oral Corticosteroids and Onset of Cardiomyopathy in Duchenne Muscular Dystrophy
Journal of Pediatrics, 2013 Oct;163(4):1080-4.e1
Barber BJ, Andrews JG, Lu Z, et al.
[Read summary]

Disparities in the Diagnostic Process of Duchenne and Becker Muscular Dystrophy
Genetics in Medicine, 2011 Nov;13(11):942-7
Holtzer C, Meaney FJ, Andrews J, et al.
[Read summary]

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

Diagnosis and management of Duchenne muscular dystrophy, part 1: diagnosis, and pharmacological and psychosocial management
Lancet Neurology, 2010 Jan;9(1):77-93
Bushby K, Finkle R, Birnkrant DJ, et al.
[Read summary]

Diagnosis and management of Duchenne muscular dystrophy, part 2: implementation of multidisciplinary care
Lancet Neurology, 2010 Feb;9(2):177-89
Bushby K, Frinkel R, Birnkrant DJ, et al.
[Read summary]

Other Selected MD Literature

Motor delays: Early identification and evaluation
Pediatrics, 2013 Jun;131(6):e2016-27
Noritz GH, Murphy NA; Neuromotor Screening Expert Panel
[Read summary]

Clinic-Based Infant Screening for Duchenne Muscular Dystrophy: A Feasibility Study
PLoS Currents Muscular Dystrophy, 2012 May 2; Edition 1
Cyrus A, Street N, Quary S, et al.
[Read full article]

A National Profile of Health Care and Family Impacts of Children with Muscular Dystrophy and Special Health Care Needs in the United States
Journal of child Neurology, 2012 May;27(5):569-576
Ouyang L, Grosse SD, Fox MH, Bolen J.
[Read full article]

Evidence Based Path to Newborn Screening for Duchenne Muscular Dystrophy
Annals of Neurology, 2012 Mar;71(3):304-13
Mendell JR, Shilling MS, Leslie ND, et al.
[Read summary]

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