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Study identifier: NCT04635891 Synced from ClinicalTrials.gov · July 29, 2026
● Recruiting

Motor Outcomes to Validate Evaluations in FSHD (MOVE FSHD)

Condition: FSHD  ·  Sponsor: University of Kansas Medical Center

PhaseN/A
Planned participants450
Who can joinAll sexes, N/A to no upper limit
Healthy volunteersNo

About this study

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).

This description comes directly from the study's public registry record.

Talk to the study team

Michaela Walker, MPH  ·  913-945-9920  ·  mwalker20@kumc.edu

Leann Lewis, MSGC  ·  585-275-7680  ·  Leann_Lewis@URMC.Rochester.edu

Always discuss trial participation with your own doctor first.

Locations (21)

David Geffen School of Medicine at UCLALos Angeles, California, United StatesRecruiting
Neuromuscular Disorders Program at Stanford University School of MedicineStanford, California, United StatesRecruiting
University of Colorado Anschutz Medical CampusAurora, Colorado, United StatesRecruiting
Univeristy of Florida GainesvilleGainesville, Florida, United StatesRecruiting
University of IowaIowa City, Iowa, United StatesRecruiting
Univeristy of Kansas Medical CenterKansas City, Kansas, United StatesRecruiting
Kennedy Krieger InstituteBaltimore, Maryland, United StatesRecruiting
University of Rochester Medical CenterRochester, New York, United StatesRecruiting
Duke University - Lenox Baker Children's HospitalDurham, North Carolina, United StatesRecruiting
The Ohio State University Medical CenterColumbus, Ohio, United StatesRecruiting
Austin Neuromuscular CenterAustin, Texas, United StatesRecruiting
Univeristy of Texas Southwestern Medical CenterDallas, Texas, United StatesRecruiting

+ 9 more locations — full list on the registry record.

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Source record: clinicaltrials.gov/study/NCT04635891