01/19/2010

Attention parents of children with Duchenne and Becker muscular dystrophy (D/BMD), congenital muscular dystrophy (CMD), and spinal muscular atrophy (SMA)

The National Task Force for the Early Identification of Childhood Neuromuscular Disorders is conducting a survey.  We want to learn more about parents’ first concerns about their child and how they described those concerns to their health care providers.  The Task Force understands that there may be a long time between when a parent first has worries about an infant or child and when the diagnosis happens.  This survey is one part of an outreach program designed to reduce the time it takes for families to get an accurate diagnosis of neuromuscular disorders. 

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).

If you have a child diagnosed with DMD, BMD, CMD, or SMA, and if your child was diagnosed between the ages of 6 months and 9 years of age, you are invited to take part in this brief survey.  The survey is completely anonymous and we do not collect any personally identifiable information. 

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

Even if you see information about this survey in more than one place, please only fill it out once. 

Please respond to this survey by March 15, 2010. Thank you for helping us with this important project.