Actively Recruiting
Motor Outcomes to Validate Evaluations in FSHD (MOVE FSHD)
Led by University of Kansas Medical Center · Updated on 2026-05-07
450
Participants Needed
21
Research Sites
367 weeks
Total Duration
On this page
Sponsors
U
University of Kansas Medical Center
Lead Sponsor
F
FSHD Society, Inc.
Collaborating Sponsor
AI-Summary
What this Trial Is About
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).
CONDITIONS
Official Title
Motor Outcomes to Validate Evaluations in FSHD (MOVE FSHD)
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Genetically confirmed FSHD (types 1 or 2) or clinical diagnosis of FSHD with characteristic findings on exam and an affected parent or offspring.
You will not qualify if you...
- Unwilling or unable to provide informed consent.
- Any other medical condition which in the opinion of the investigator would interfere with study participation.
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Trial Site Locations
Total: 21 locations
1
David Geffen School of Medicine at UCLA
Los Angeles, California, United States, 90095
Actively Recruiting
2
Neuromuscular Disorders Program at Stanford University School of Medicine
Stanford, California, United States, 94306
Actively Recruiting
3
University of Colorado Anschutz Medical Campus
Aurora, Colorado, United States, 80045
Actively Recruiting
4
Univeristy of Florida Gainesville
Gainesville, Florida, United States, 32608
Actively Recruiting
5
University of Iowa
Iowa City, Iowa, United States, 52242
Actively Recruiting
6
Univeristy of Kansas Medical Center
Kansas City, Kansas, United States, 66160
Actively Recruiting
7
Kennedy Krieger Institute
Baltimore, Maryland, United States, 21205
Actively Recruiting
8
University of Rochester Medical Center
Rochester, New York, United States, 14642
Actively Recruiting
9
Duke University - Lenox Baker Children's Hospital
Durham, North Carolina, United States, 27705
Actively Recruiting
10
The Ohio State University Medical Center
Columbus, Ohio, United States, 43221
Actively Recruiting
11
Austin Neuromuscular Center
Austin, Texas, United States, 78759
Actively Recruiting
12
Univeristy of Texas Southwestern Medical Center
Dallas, Texas, United States, 75390
Actively Recruiting
13
University of Texas Health San Antonio
San Antonio, Texas, United States, 78229
Not Yet Recruiting
14
University of Utah
Salt Lake City, Utah, United States, 84132
Actively Recruiting
15
Virginia Commonwealth University
Richmond, Virginia, United States, 23219
Actively Recruiting
16
University of Washington Medical Center
Seattle, Washington, United States, 98195
Actively Recruiting
17
University of Sao Paulo
São Paulo, Brazil
Actively Recruiting
18
University of Calgary
Calgary, Alberta, Canada, T2N1N4
Not Yet Recruiting
19
Ottawa Hospital Research Institute
Ottawa, Ontario, Canada, K1y 4e9
Actively Recruiting
20
University of McGill
Montreal, Quebec, Canada, H3A 2B4
Not Yet Recruiting
21
Sheffield Teaching Hospital
Sheffield, South Yorkshire, United Kingdom, S10 2JF
Actively Recruiting
Research Team
M
Michaela Walker, MPH
CONTACT
L
Leann Lewis, MSGC
CONTACT
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
1
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