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Articles & Key Findings

New Tool for Parents Helps Address Concerns

Mother and daughter playing with blocks

A new tool, called Physical Developmental Delays: What to look for, has been created for parents concerned about the physical development of their child.

This tool is designed to reduce the time to finding a diagnosis and getting children with delays in their physical development into services. The tool reinforces that parents know their child best and should trust their instincts. Physical Developmental Delays: What to look for was developed as part of a three-year collaboration between the American Academy of Pediatrics (AAP) and the Centers for Disease Control and Prevention’s (CDC) National Center on Birth Defects and Developmental Disabilities.

Why an Early Diagnosis is Important

The sooner a child with a physical developmental delay gets a diagnosis, the sooner the family can access medical care, early intervention services, and special education resources.

  • This new online tool was developed in response to research generated from CDC’s Muscular Dystrophy Surveillance, Tracking, and Research Network. Researchers working on Duchenne muscular dystrophy found an average time of one year from when parents first noticed a sign or symptom of physical developmental delay in their child, to when they took their child to a pediatrician or family practitioner for evaluation.1
  • This same study also found an average delay of two and one half years from when parents first noticed the earliest sign or symptom of physical developmental delay in their child to when their child received a definite diagnosis of Duchenne muscular dystrophy.1 This study was based on data from children without a family history of muscular dystrophy.
Delay in Diagnosis of DMD Graphic - Research from the Muscular Dystrophy Surveillance Network shows an average of two and half years between when a parent or caregiver notices the first signs and symptoms of Duchenne, and a diagnosis based on a muscle biopsy or DNA test. It takes one year from when the first sign or symptom is noticed to when a child is taken to a pediatrician or family practitioner for evaluation. Then it takes another year and a half from that first evaluation to the diagnosis based on muscle biopsy or DNA test. The first sign or symptom is noticed at age two and a half, the first evaluation occurs at age three and a half, and the diagnosis by muscle biopsy or DNA test occurs at age 5.

The more CDC learns about diagnostic delay, the more scientists can help physicians, nurses, and allied health professionals potentially recognize muscular dystrophy at an earlier age. This early recognition can lead to improved and more tailored care for people living with muscular dystrophy so that each person can reach his or her full potential. For families and caregivers, understanding more about muscular dystrophy means having the tools to find and provide the best care for their loved ones.

What you can do

  • Partners and policymakers: Help us spread the word by sharing this new tool with your stakeholders.
  • Parents: Share the link to Physical Developmental Delays: What to look for with your family, friends, and coworkers. Consider posting to your social media.
  • Pediatricians: Reacquaint yourself with the AAP’s Clinical Report on Motor Delay for guidance, referral, and testing recommendations.

Resources

Reference

  1. Ciafaloni E, Fox DJ, Pandya S, Westfield CP, Puzhankara S, Romitti PA, Mathews KD, Miller TM, Matthews DJ, Miller LA, Cunniff C, Druschel CM, Moxley RT. Delayed diagnosis in Duchenne muscular dystrophy: data from the Muscular Dystrophy Surveillance, Tracking, and Research Network (MD STARnet). J Pediatr 2009 Sep;155(3):380-5.

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