Motor Outcomes to Validate Evaluations in Pediatric FSHD (MOVE Peds)
Status: Recruiting
Location: See all (7) locations...
Study Type: Observational
SUMMARY
The primary goal of this study is to validate motor and functional outcomes and refine clinical trial strategies for pediatric-onset FSHD
Eligibility
Participation Requirements
Sex: All
Minimum Age: 5
Maximum Age: 17
Healthy Volunteers: f
View:
• Age 5-17 years.
• Genetically confirmed FSHD (types 1 or 2).
• Symptomatic weakness (facial, shoulder, core, or limb weakness)
• Able to complete a 10-meter walk without the support of another person in less than 12 seconds (canes, walking sticks, and braces allowed; no walker). In order to include early onset participants up to 8 individuals will be entered with baseline 10MWR \> 12 seconds or who are no longer ambulatory (≤10%)
Locations
United States
California
Stanford University
NOT_YET_RECRUITING
Palo Alto
Iowa
University of Iowa
NOT_YET_RECRUITING
Iowa City
Kansas
University of Kansas Medical Center
NOT_YET_RECRUITING
Kansas City
North Carolina
Duke University
NOT_YET_RECRUITING
Durham
New York
University of Rochester
NOT_YET_RECRUITING
Rochester
Utah
University of Utah
NOT_YET_RECRUITING
Salt Lake City
Other Locations
Australia
Murdoch Children's Research Institute
RECRUITING
Melbourne
Contact Information
Primary
Michaela Walker, MPH
mwalker20@kumc.edu
913-945-9920
Backup
Rebecca Clay, BS
rclay@kumc.edu
9139459936
Time Frame
Start Date: 2025-05-22
Estimated Completion Date: 2028-05
Participants
Target number of participants: 80
Treatments
Cohort One
Cohort One will be individuals who are able to complete the 10 meter walk/run test in less than twelve seconds
Cohort Two
cohort two will be individuals who complete the 10 meter walk/run test in more than 12 seconds or is no longer able to complete.
Related Therapeutic Areas
Sponsors
Collaborators: University of Rochester, University of Iowa, Stanford University, Seattle Children's Hospital, Murdoch Childrens Research Institute, University of California, Irvine, University of Utah, Kennedy Krieger Institute, Baltimore, MD, Duke University, Coriell Institute, Leiden University Medical Center, National Institute of Neurological Disorders and Stroke (NINDS)
Leads: University of Kansas Medical Center