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Updated: May 21, 2026

Measurements of Motor Function and Other Clinical Outcome Parameters in Ambulant Children with Duchenne Muscular Dystrophy
09:18

Measurements of Motor Function and Other Clinical Outcome Parameters in Ambulant Children with Duchenne Muscular Dystrophy

Published on: January 12, 2019

Changes in Provision of Recommended Cardiac Care for Duchenne Muscular Dystrophy Using a Longitudinal Cohort

Jennifer G Andrews1, Brittany L Heikke2, Omar Meziab1

  • 1Department of Pediatrics, University of Arizona, Tucson, Arizona, USA.

Muscle & Nerve
|May 20, 2026
PubMed

Insights

Cardiac care for Duchenne muscular dystrophy (DMD) improved after 2010 guidelines. This study shows increased cardiac assessments and frequency of care for DMD patients following guideline updates.

Area of Science:

  • Cardiology
  • Neurology
  • Genetics

Background:

  • Cardiac disease is the primary cause of mortality in Duchenne muscular dystrophy (DMD).
  • Cardiovascular guidelines for DMD patients have been updated multiple times, including in 2010, 2018, and 2025.
  • The impact of these guideline updates on actual cardiac care delivery is not well understood.

Purpose of the Study:

  • To compare the provision of recommended cardiac care for individuals with DMD before and after the publication of the 2010 DMD Care Considerations.
  • To assess changes in the timing and frequency of cardiac assessments in DMD patients.

Main Methods:

  • Utilized data from the MD STARnet registry for individuals with DMD.
  • Included patients with at least one visit between March 2010 and March 2016.
  • Compared cardiac care received during two periods: February 2005-February 2010 (pre-guidelines) and March 2010-March 2016 (post-guidelines).
  • Stratified analysis by age interval, diagnosis age, and left ventricular function (LVF) severity.

Main Results:

  • A significant increase in baseline cardiac assessments at diagnosis was observed (39.5% to 52.4%).
  • Follow-up cardiac assessments increased significantly: every other year through age 10 (22.1% to 36.0%) and annually for ages 11+ (6.0% to 18.1%).
  • Semi-annual assessments for patients with LVF abnormality also increased (0.6% to 1.4%).
  • No change in LVF assessment was noted for new-onset sinus tachycardia; however, arrhythmias (excluding sinus tachycardia) prompted Holter monitoring in the post-guidelines period (14.2%).

Conclusions:

  • The publication of the 2010 DMD Care Considerations was associated with increased timing and frequency of cardiac care.
  • Further research is needed to understand the relationship between adherence to guidelines and cardiac outcomes.
  • Identifying barriers to guideline-based care is crucial for ensuring equitable management of DMD patients.
Abstract

Keywords:
2010 Care ConsiderationsDuchenne muscular dystrophycardiomyopathyguideline adherence

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