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Motor Outcomes to Validate Evaluations in FSHD (MOVE FSHD)
Who can join
All ages · All sexes
Full eligibility criteria
Inclusion Criteria: * Genetically confirmed FSHD (types 1 or 2) or clinical diagnosis of FSHD with characteristic findings on exam and an affected parent or offspring. Exclusion Criteria: * Unwilling or unable to provide informed consent. * Any other medical condition which in the opinion of the investigator would interfere with study participation.
About the 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).
Sponsor: University of Kansas Medical Center · Participants: 450 · Started: Dec 15, 2020
Contact the study team
- Michaela Walker, MPH · Phone: 913-945-9920
- Leann Lewis, MSGC · Phone: 585-275-7680
Official record on ClinicalTrials.gov — NCT04635891
Locations in the U.S.
From ClinicalTrials.gov, data retrieved Sep 30, 2026. Each study sets its own eligibility; the study team decides who can join.