Clinician Brief: Muscular Dystrophy

At a glance

  • Early screening and diagnosis of muscular dystrophy are important.
  • Clinicians have many resources for the care and management of the various types of muscular dystrophy.
Early muscular dystrophy diagnosis

Screening and diagnosis

Early screening and identification can reduce the “diagnostic odyssey” that families of children with motor delays may face. Without early screening, families can spend years visiting different doctors and undergoing many tests to reach a correct diagnosis. Early screening enables a faster referral to a specialist. Early identification can mean quicker access to care, early intervention programs, or special education resources.

A young boy visits his doctor
Learn the steps to identify pediatric muscle weakness.

Child Muscle Weakness ‎

This web-based tool may help primary care clinicians, therapists, and other specialists diagnose child muscle weakness. The purpose of this tool is to decrease the time between initial signs and diagnosis, enabling earlier access to care.
Access the tool

Patient management for Duchenne muscular dystrophy

CDC funded development of updated care considerations for people living with Duchenne muscular dystrophy (DMD). As science and medicine are advancing, people with DMD are living longer; therefore, their care throughout life is evolving as well. These care considerations, funded by the CDC, are intended to

  • Raise the standards of care
  • Help clinicians provide the best possible care to people with DMD
  • Give families and caregivers the necessary information to manage care

The updated care considerations for DMD are contained in a set of three articles published in Lancet Neurology. They offer the latest clinical considerations to improve care and quality of life for people living with DMD. Clinicians who specialize in treating people with DMD developed these care considerations. They are based on current evidence for optimal care reported in the literature and the clinicians' own clinical experiences.

The Pediatrics supplement is a set of 13 articles expanding on the clinical care for subspecialties in the Lancet Neurology articles. The supplement provides resources, including a toolkit to help individuals with DMD transition into adult medical care. These articles and resources can help families and providers manage DMD care. Also included is an article on key elements of care considerations that clinics can measure.

CDC funded the American Academy of Pediatrics to develop Duchenne Muscular Dystrophy Diagnosis and Care. This free online course aims to educate clinicians on the diagnosis and care of individuals with Duchenne muscular dystrophy. The 5-part webinar series is based on the 2018 DMD Care Considerations and offers learning credits to clinicians.

Patient management for other types of muscular dystrophy

CDC funded the American Academy of Neurology (AAN) to develop treatment and care guidelines for other types of muscular dystrophy. These include limb-girdle muscular dystrophy, facioscapulohumeral muscular dystrophy, and congenital muscular dystrophy. The AAN developed these guidelines using evidence from existing medical studies and expert opinion. These guidelines were published for healthcare professionals who treat individuals with muscular dystrophy.

Resources

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Content Source:
National Center on Birth Defects and Developmental Disabilities