60
Participants
Start Date
May 1, 2021
Primary Completion Date
April 30, 2026
Study Completion Date
April 30, 2026
Imaging, gait analysis, growth, joint test, hearing test, questionnaire, etc.
This study includes 15 major assessments: clinical assessment procedures; anthropometric measurements; activity of daily living and quality-of-life questionnaires; gait kinematics and kinetics analysis; pulmonary function tests (PFT); skeletal radiographs and dual-energy x-ray absorptiometry (DXA); MRI in cervical spine, temporal bones, and hip; computed tomography angiography (CTA) for tracheal obstruction; CT for temporal bones; anesthetic encounters; joint mobility; hearing function; biochemical analyses; and pathological analyses.
RECRUITING
Nemours Children's Health, Delaware Valley, Wilmington
Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)
NIH
Nemours Children's Clinic
OTHER