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Motor Outcomes to Validate Evaluations in FSHD (MOVE FSHD)

NCT04635891·21 sites·ClinicalTrials.gov

What this study is about

Take this into the appointment.

Saves the questions and what to expect into your notes, next to the visit they belong to.

Keep this study

Michaela Walker, MPH
CONTACT
913-945-9920 mwalker20@kumc.edu
Leann Lewis, MSGC
CONTACT
585-275-7680 Leann_Lewis@URMC.Rochester.edu

Lead

University of Kansas Medical Center

With

FSHD Society, Inc.
Friends Research Institute, Inc.
University of Rochester
University of Nevada, Reno
FSHD Canada
Avidity Biosciences, Inc.
AMRA Medical
Seattle Children's Hospital
Dyne Therapeutics
Hoffmann-La Roche
Springbok Analytics
Novartis Pharmaceuticals

Age

Any age

Sex

ALL

Healthy volunteers

Not accepted

You may be eligible if

Genetically confirmed FSHD (types 1 or 2) or clinical diagnosis of FSHD with characteristic findings on exam and an affected parent or offspring.

You may not be if

Unwilling or unable to provide informed consent.
Any other medical condition which in the opinion of the investigator would interfere with study participation.

The record

StatusRecruiting

PhaseNo phase

Taking part450

StartedDec 2020

UpdatedMay 7, 2026

Conditions

Where21

David Geffen School of Medicine at UCLA
Los Angeles, California, United States
Neuromuscular Disorders Program at Stanford University School of Medicine
Stanford, California, United States
University of Colorado Anschutz Medical Campus
Aurora, Colorado, United States

Clareo Health | Motor Outcomes to Validate Evaluations in FSHD (MOVE FSHD)