RecruitingNCT06847282

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


Sponsor

University of Kansas Medical Center

Enrollment

80 participants

Start Date

May 22, 2025

Study Type

OBSERVATIONAL

Conditions

Summary

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


Eligibility

Min Age: 5 YearsMax Age: 17 Years

Inclusion Criteria4

  • 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 Criteria7

  • 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

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Locations(7)

Stanford University

Palo Alto, California, United States

University of Iowa

Iowa City, Iowa, United States

University of Kansas Medical Center

Kansas City, Kansas, United States

University of Rochester

Rochester, New York, United States

Duke University

Durham, North Carolina, United States

University of Utah

Salt Lake City, Utah, United States

Murdoch Children's Research Institute

Melbourne, Australia

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NCT06847282


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