Sociodemographic and Clinical Profile of Adult Males With Duchenne Muscular Dystrophy

Manju Jayasimha Pula Jayaram; Hollie A Clark; Natalie Street; Yining Yang; Shannon Kilburn; Shiny Thomas; Christina Westfield; Katherine D Mathews; Emma Ciafaloni; Aida Soim; Muscular Dystrophy Surveillance, Tracking, and Research Network (MD STARnet)

doi:10.1002/mus.70392

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Sociodemographic and Clinical Profile of Adult Males With Duchenne Muscular Dystrophy

Manju Jayasimha Pula Jayaram, Hollie A Clark, Natalie Street, Yining Yang, Shannon Kilburn, Shiny Thomas, Christina Westfield, Katherine D Mathews, Emma Ciafaloni, Aida Soim, …

Muscle & nerve

09/16/2026

DOI: 10.1002/mus.70392

PMID: 42750368

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Abstract

Due to improvements in clinical care, individuals with Duchenne muscular dystrophy (DMD) are living into adulthood, but little has been published about adults with DMD. We describe key characteristics of adults with DMD using US population-based surveillance data. Muscular Dystrophy Surveillance Tracking and Research network (MD STARnet) data were used to describe sociodemographic and clinical characteristics of living and deceased adult males with DMD, born since January 1, 1982, who were ≥ 18 years old at last healthcare visit, using healthcare visit data through 2016. Frequencies and percentages were used to describe the distribution of characteristics, and ages at key milestones were described using medians and interquartile ranges. As of December 31, 2016, of 173 adult males, 61.8% were living. At their last visit, median age was 22.5 years and 35.3% had completed some college. Over 75% were on noninvasive ventilation, over 70% had cardiomyopathy, and 83.8% were prescribed cardiac medications. Corticosteroids were used by 67.1%, including 8.7% as of last clinic visit/death. Public insurance was more common among deceased (66.7%) than living (52.3%). Cough assist was used by 82.2% of living versus 57.6% of deceased individuals. Except for cough assist and insurance type, sociodemographic and clinical characteristics were similar between the living and deceased. Low continuation of corticosteroids into adulthood needs interpretation in the context of the study's timeframe. These results can assist clinicians in anticipating the care needs of adults with DMD.

Cardiomyopathy

Adults

Duchenne muscular dystrophy

corticosteroid usage

noninvasive ventilation

Details

Title: Subtitle: Sociodemographic and Clinical Profile of Adult Males With Duchenne Muscular Dystrophy
Creators: Manju Jayasimha Pula Jayaram - New York State Department of Health
Hollie A Clark - Centers for Disease Control and Prevention
Natalie Street - National Center on Birth Defects and Developmental Disabilities
Yining Yang - Bureau of Environmental and Occupational Epidemiology, Center for Environmental Health, New York State Department of Health, Albany, New York, USA
Shannon Kilburn - New York State Department of Health
Shiny Thomas - New York State Department of Health
Christina Westfield - South Carolina Department of Health and Environmental Control
Katherine D Mathews - University of Iowa
Emma Ciafaloni - University of Rochester Medicine
Aida Soim - New York State Department of Health
Muscular Dystrophy Surveillance, Tracking, and Research Network (MD STARnet)
Resource Type: Journal article
Publication Details: Muscle & nerve
DOI: 10.1002/mus.70392
PMID: 42750368
NLM abbreviation: Muscle Nerve
ISSN: 1097-4598
eISSN: 1097-4598
Publisher: Wiley
Grant note: DD001123 / JG CDC HHS DD001054 / JG CDC HHS DD001126 / JG CDC HHS DD000190 / JG CDC HHS DD001120 / JG CDC HHS DD001119 / JG CDC HHS DD000191 / JG CDC HHS DD000189 / JG CDC HHS
Language: English
Electronic publication date: 09/16/2026
Academic Unit: Neurology; Stead Family Department of Pediatrics; Iowa Neuroscience Institute; Neurology (Pediatrics)
Record Identifier: 9985231344102771

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