NIH Seeks Children and Caregivers to Participate in Quality of Life Study

Researchers at the National Institutes of Health (NIH) seek children with neuromuscular disorders (NMDs) and/or their caregivers (parent or legal guardian) to complete questionnaires. Researchers would like to develop a tool to better assess the quality of life of people with NMDs, such as muscular dystrophy. The goal of this study is to validate two different questionnaires, which have been designed to measure quality of life in children with NMDs.

You and your child may participate if:

  • You are a caregiver of a child 5-17 years old with a NMD.
  • Your child is at least 8 years old; both you and your child may be eligible to enroll.
  • You are comfortable talking about your child’s condition.


  • All study procedures can be completed during in-person visits or online.
  • You will be asked to complete two questionnaires online (you may be asked to complete them twice).
  • You and your child will be asked to complete different questionnaires (if your child is over 8 years old).
  • The questionnaires will take about 20-25 minutes to complete.
  • Some of the questions are about your child’s physical ability, levels of anger, anxiety, fatigue, depression and how the NMD might impact their interaction with others.


Researchers are located at NIH Clinical Center, America’s research hospital, in Bethesda, Md.

There are no study visits for your participation. The questionnaire can be completed from home.

To learn more about this trial, visit and enter 14-NR-0118 into the search box, or contact Anna Kuo at 301-451-4881  or