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Motor Outcomes to Validate Evaluations in FSHD (MOVE FSHD)
Sponsor: University of Kansas Medical Center
Summary
The primary goal of this proposal is to collect motor and functional outcomes specific to FSHD over time. By collecting measures specific to FSHD, this will help ensure the best level of clinical care is being provided. Also, the hope is to speed up drug development by gaining a better understanding of how having FSHD impacts motor function and other health outcomes (i.e. breathing, wheelchair use, etc.) and how big a change in motor function would be clinically meaningful to those with FSHD. Motor Outcomes to Validate Evaluations in FSHD (MOVE FSHD) will have approximately 450 FSHD participants followed for a minimum of 3 years. A subset of MOVE FSHD participants, approximately 200, will participate in the MOVE+ sub-study which includes whole body MRI and reachable workspace, as well as optional muscle biopsy and wearable device (US participants only).
Key Details
Gender
All
Age Range
Any - Any
Study Type
OBSERVATIONAL
Enrollment
450
Start Date
2020-12-15
Completion Date
2028-01
Last Updated
2025-04-24
Healthy Volunteers
No
Conditions
Locations (20)
David Geffen School of Medicine at UCLA
Los Angeles, California, United States
Neuromuscular Disorders Program at Stanford University School of Medicine
Stanford, California, United States
University of Colorado Anschutz Medical Campus
Aurora, Colorado, United States
Univeristy of Florida Gainesville
Gainesville, Florida, United States
University of Iowa
Iowa City, Iowa, United States
Univeristy of Kansas Medical Center
Kansas City, Kansas, United States
Kennedy Krieger Institute
Baltimore, Maryland, United States
University of Rochester Medical Center
Rochester, New York, United States
The Ohio State University Medical Center
Columbus, Ohio, United States
Austin Neuromuscular Center
Austin, Texas, United States
Univeristy of Texas Southwestern Medical Center
Dallas, Texas, United States
University of Texas Health San Antonio
San Antonio, Texas, United States
University of Utah
Salt Lake City, Utah, United States
Virginia Commonwealth University
Richmond, Virginia, United States
University of Washington Medical Center
Seattle, Washington, United States
University of Sao Paulo
São Paulo, Brazil
University of Calgary
Calgary, Alberta, Canada
Ottawa Hospital Research Institute
Ottawa, Ontario, Canada
University of McGill
Montreal, Quebec, Canada
Sheffield Teaching Hospital
Sheffield, South Yorkshire, United Kingdom