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Motor Outcomes to Validate Evaluations in FSHD (MOVE FSHD) — MOVE FSHD  

FSHD Clinical Trial

Official title:
Motor Outcomes to Validate Evaluations in FSHD (MOVE FSHD)

Clinical Trial Summary

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 muscle biopsy.

Clinical Trial Description

n/a

Study Design

Related Conditions & MeSH terms

  • FSHD
  • Muscular Dystrophy, Facioscapulohumeral
Clinical Trial Details
NCT number NCT04635891
Study type Observational
Source University of Kansas Medical Center
Contact Michaela Walker, MPH
Phone 913-945-9920
Email mwalker20@kumc.edu
Status Recruiting
Phase
Start date December 15, 2020
Completion date January 2027
View Details
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