Dr. Melissa Dixon at the University of Utah Department of Pediatrics is conducting this study. Dr. Dixon is a psychologist whose clinical interests include understanding cognitive function and the psychological and neurobehavioral symptoms associated with neuromuscular disorders in children and adults.
She is also interested in understanding psychological distress in children with chronic medical illness. Her research focuses on longitudinal assessment of cognitive function and brain connectivity and function in children with neuromuscular disease. (Get more information on Dr. Dixon’s credentials.)
Study Purpose
Cognitive Function and Neuroimaging in Myotonic Dystrophy (IRB_001116528)
The purpose of this study is to learn more about how congenital myotonic dystrophy and childhood-onset myotonic dystrophy affects thinking, memory, attention, brain function, and how these processes change over time. Dr. Dixon and her research team want to find out how the brains of children and adolescents with CDM and chDM1 are connected together through fibers that are like cable connections called white matter tracts, and how these connections may change with time, be related to age, and differ from the brains of children and adolescents without CDM or chDM1.
Study Design and Eligibility Criteria
Male and female children and adolescents (age 7 to 16 years) diagnosed with CDM or chDM1 are invited to participate. Participation includes two visits to the University of Utah. All study procedures will be conducted during a single-day outpatient visit at baseline (year 1) and 12 months (year 2). Study procedures include the consent/assent process, physical exam, completing questionnaires about how myotonic dystrophy affects behavior and quality of life, neuropsychological testing, and a MRI. The testing is approximately 4-6 hours per visit.
To Follow Up and Enroll
If you interested in participating or learning more about this study, please contact Melissa Dixon, PhD, MS, Department of Pediatrics, University of Utah, 15 North 2030 East, Room 2160A, Salt Lake City, Utah 84112. Dr. Dixon is also available by phone (office) 801-585-7606 or by email.