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
4 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
Researchers are conducting a long-term observational study called Motor Outcomes to Validate Evaluations in FSHD (MOVE FSHD) to better understand how facioscapulohumeral muscular dystrophy (FSHD) affects motor and functional abilities over time. This study aims to improve clinical care and support drug development by tracking changes in motor function and health outcomes such as breathing and wheelchair use in people with FSHD. The study is led by the University of Kansas Medical Center and plans to follow around 450 participants for at least three years. Participants will continue to receive their usual medical care as determined by their doctors. Study visits are expected to occur at least once a year following standard care schedules. A subgroup of approximately 200 participants will take part in additional assessments including whole body MRI, reachable workspace evaluations, optional muscle biopsies, and use of wearable devices for those in the United States. During the study, researchers will collect a variety of motor and functional measures such as a 10-meter walk/run test, shoulder and arm range of motion and function, and lung function tests (spirometry) over a period of up to five years. Other assessments include trunk and hand function, timed up and go tests, clinical severity scores, patient-reported outcomes, muscle strength testing, and exercise and pain evaluations. Saliva samples will be collected once for methylation analysis. These measures will help track disease progression and impacts on daily activities.
CONDITIONS
Brief 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
Your Study Journey
Duration - 2 to 4 weeks
Participants are screened for eligibility to participate in the trial.
Duration - Up to 5 years
Participants who undergo routine care are observed to collect measurements related to motor function and respiratory status.
At least 1 visit per year
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
L
Leann Lewis, MSGC
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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