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Motor Outcomes to Validate Evaluations in Pediatric FSHD (MOVE Peds)

RecruitingObservational study

Who can join

Ages 5 to 17 · All sexes

Full eligibility criteria
Inclusion Criteria:

* Age 5-17 years.
* Genetically confirmed FSHD (types 1 or 2).
* Symptomatic weakness (facial, shoulder, core, or limb weakness)
* Able to complete a 10-meter walk without the support of another person in less than 12 seconds (canes, walking sticks, and braces allowed; no walker). In order to include early onset participants up to 8 individuals will be entered with baseline 10MWR \> 12 seconds or who are no longer ambulatory (≤10%)

Exclusion Criteria:

* Unwilling or unable to provide informed consent or assent. Any other medical condition which in the opinion of the investigator would interfere with study participation.
* Malignancy with ongoing treatment with chemotherapeutic agents or anabolic agents
* Use of immunosuppressants including prednisone or performance enhancing drugs including testosterone within 6 months
* Pregnancy
* Recent or ongoing infection
* Presence of contraindication to performance of MRI: pacemaker, metallic foreign body in eye, brain aneurysm clip (unless documented as MRI compatible)
* In the opinion of the investigator unable to follow directions for standardized testing

  * Note: Not being able to complete MRI will not result in a screen failure. If subject is not able to complete the procedure due to fear or anxiety, they will have the opportunity to try again at later visits. However, Subject must be willing to attempt to perform the MRI to meet inclusion/exclusion criteria

About the study

The primary goal of this study is to validate motor and functional outcomes and refine clinical trial strategies for pediatric-onset FSHD

Sponsor: University of Kansas Medical Center · Participants: 80 · Started: May 22, 2025

Contact the study team

Official record on ClinicalTrials.gov — NCT06847282

Locations in the U.S.

CaliforniaStanford University, Palo Alto (Not yet recruiting)
IowaUniversity of Iowa, Iowa City (Not yet recruiting)
KansasUniversity of Kansas Medical Center, Kansas City
New YorkUniversity of Rochester, Rochester
North CarolinaDuke University, Durham
UtahUniversity of Utah, Salt Lake City (Not yet recruiting)

Conditions

From ClinicalTrials.gov, data retrieved Sep 30, 2026. Each study sets its own eligibility; the study team decides who can join.