Motor Outcomes to Validate Evaluations in FSHD (MOVE FSHD)

Recruiting now

Conditions studied: FSHD

In brief

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).

Key facts

Study ID

NCT04635891

Run by

University of Kansas Medical Center

People needed

450

Starts

2020-12-15

Expected to finish

2028-01-01

Last updated by the study team

2026-05-07

Who can join

Age: any. Sex: any. Healthy volunteers: not accepted.

You may qualify 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 qualify if…

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

Where it is running

• Sheffield Teaching Hospital — Sheffield, South Yorkshire, United Kingdom (enrolling)
• Neuromuscular Disorders Program at Stanford University School of Medicine — Stanford, California, United States (enrolling)
• University of Colorado Anschutz Medical Campus — Aurora, Colorado, United States (enrolling)
• Univeristy of Florida Gainesville — Gainesville, Florida, United States (enrolling)
• University of Iowa — Iowa City, Iowa, United States (enrolling)
• Univeristy of Kansas Medical Center — Kansas City, Kansas, United States (enrolling)
• Kennedy Krieger Institute — Baltimore, Maryland, United States (enrolling)
• University of Rochester Medical Center — Rochester, New York, United States (enrolling)
• Duke University - Lenox Baker Children's Hospital — Durham, North Carolina, United States (enrolling)
• The Ohio State University Medical Center — Columbus, Ohio, United States (enrolling)
• Austin Neuromuscular Center — Austin, Texas, United States (enrolling)
• Univeristy of Texas Southwestern Medical Center — Dallas, Texas, United States (enrolling)
• University of Sao Paulo — São Paulo, Brazil (enrolling)
• Ottawa Hospital Research Institute — Ottawa, Ontario, Canada (enrolling)
• David Geffen School of Medicine at UCLA — Los Angeles, California, United States (enrolling)
• University of Utah — Salt Lake City, Utah, United States (enrolling)
• Virginia Commonwealth University — Richmond, Virginia, United States (enrolling)
• University of Washington Medical Center — Seattle, Washington, United States (enrolling)
• University of Texas Health San Antonio — San Antonio, Texas, United States
• University of Calgary — Calgary, Alberta, Canada
• University of McGill — Montreal, Quebec, Canada

Full record on ClinicalTrials.gov

Trial information comes from ClinicalTrials.gov and is refreshed daily. TrialsForMe does not provide medical care and does not run the studies it lists.