Study Seeks Parents, Guardians of Young Children with Neuromuscular Disease

The National Institute of Nursing Research, part of the National Institutes of Health (NIH) in Bethesda, Md., is seeking parents or guardians of children from birth through age 5 with a neuromuscular disease for a study to develop a questionnaire about motor function in young children.

Developing standardized motor function outcome measures is crucial to the conduct of clinical trials in neuromuscular disorders. At this time, such outcome measures for very young children have not been adequately developed.

The study will take place on the phone and at an NIH outpatient clinic in the Clinical Center in Bethesda, Md. There is no cost to participants, and any travel to NIH will be provided by the study. The time commitment ranges from two hours by phone to a one-day visit to NIH, depending on the stage of the study.

The study number is 14-NR-0023.

Prospective participants must meet the following criteria:

  • be a parent or guardian of a child (birth to 5 years old) with a confirmed neuromuscular disease;
  • be 18 or older;
  • have sufficient English-language skills to read and participate in discussions about the study questionnaire; and
  • provide consent for the study.

To participate in the study, contact Irene Arveson at (301) 451-4881 or Irene.Arveson@nih.gov.

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