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Development of a Proxy Motor Outcome Assessment in Young Children with Neuromuscular Disease

The National Institute of Nursing Research of the National Institutes of Health (NIH) is recruiting parents or guardians of children less than 6 years old with neuromuscular disease to participate in a research study to develop a questionnaire that parents or guardians will answer regarding motor function of young children with neuromuscular disease.

Purpose:
To develop a questionnaire that parents or caregivers will answer regarding motor function of young children with neuromuscular disease.
 
Eligibility:
You may qualify if you are a parent or guardian of a 0-5 year old child with confirmed neuromuscular disease and are age 18 or older, have sufficient English language skills to read and participate in discussions about the study questionnaire and can provide your own consent for the study.
 
Participation:
There is no cost in participating in this study.  The study will take place on the phone and at an NIH outpatient clinic in the Clinical Center in Bethesda, MD.  Any travel to the NIH will be provided by the study.  The time commitment ranges from 2 hours by phone to a 1-day visit to NIH, depending on the stage of the protocol you will be involved in.

The study number is 14-NR-0023 and the sponsor is NIH.
 
Clinicaltrials.gov ID number:  NCT02007213
 
Research contact:
Irene Arveson, BSN, RN
301-451-4881
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