Parent Survey in DMD, BMD, CMD and SMA

An online survey aims to reduce the time it takes parents to get an accurate diagnosis for their children.

Article Highlights:
  • A new survey from the CDC asks parents about their experiences trying to obtain a diagnosis for their child with DMD, BMD, CMD or SMA.
  • The goal of the survey is to reduce the time it takes to get an accurate diagnosis of a neuromuscular disease.
  • The online survey is open through March 15.
by Quest Staff on January 21, 2010 - 2:57pm

There’s often quite a gap between the time when parents first have worries about their infant or child and when they finally learn the child has a neuromuscular disease.

The National Task Force for the Early Identification of Childhood Neuromuscular Disorders is conducting a survey to learn more about parents' first concerns about their children and how they described those concerns to their health care providers, as part of an effort to reduce the time it takes for families to get an accurate diagnosis of neuromuscular disorders. 

Survey responses must be received by March 15.  

The Task Force is made up of medical professionals and advocates from several neuromuscular organizations, including the Muscular Dystrophy Association. The Task Force and this survey are funded by the Centers for Disease Control and Prevention (CDC).

Parents who have a child diagnosed with spinal muscular atrophy or Duchenne, Becker or congenital muscular dystrophy, and who learned the diagnosis when their child was between the ages of 6 months and 9 years of age, are invited to take part in this brief survey.  The survey is completely anonymous and does not collect any personally identifiable information.

Visit https://www.surveymonkey.com/s/97KP7XZ to participate in the survey.

Parents are asked to fill out the survey only once, even if they receive information about it from more than one source.

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