Purpose:

The purpose of this survey is to collect information about families of people with Duchenne muscular dystrophy (DMD) all over the USA. The survey will ask for information about the impact of DMD on your family, the needs of your family for health services, your use of those health services, the overall wellness of people with DMD in your family and your attitude toward newborn screening for DMD. This survey will assist us to identify areas of need in health care services and research to improve overall DMD management of care. 

Further Study Details:

WHY IS THIS SURVEY IMPORTANT?

• DMD is a common disease, affecting about 1 in 3500 boys.
• People with DMD have the highest annual cost for outpatient rehabilitation.
• This is the first time a large-scale survey has been done in the USA.
• There may be differences across the country in the way people with DMD receive their care, and how that care influences their health and quality of life. We will compare your answers to others around the country to look for differences that might help us find out what works best to keep people with DMD as healthy as possible.
• It is not known whether neonatal screening programs that can help families find out that their child has DMD shortly after birth actually help. We would like your opinions about neonatal screening, whether your child was diagnosed with DMD through a screening program or not. It will help us to look for differences between those who have and have not participated in such programs to see whether they are useful or not.

TAKING THE SURVEY

You are free to choose to fill out the survey or not. We expect the survey to take about 1 hour to complete. The only risk for you is that some of the questions may make you feel uncomfortable. While you will not benefit directly from completing this survey, CDC will use information obtained from the survey to help identify the most common needs of people with DMD and the best practices of doctors caring for those people nationwide.

THE SURVEY ASKS ABOUT:

• Your family life, your child’s health, the medical care your child receives, the development of your child, school issues, and about the process of having a child diagnosed with DMD ; measures the thoughts and actions that you use to cope with the stressful encounters of everyday living ;
• How your family members interact with and respond to each other in day-to-day life.
• How you think your child feels about physical, emotional and school functions.
• How you handle family and personal issues with an ill or disabled family member.
• Any benefits that you might have had from the experience of having a child with DMD.

Subject Inclusion Criteria:

Parent of a male child with reported diagnosis of DMD

Subject Exclusion Criteria:

Failure to meet criteria mentioned above.