Condition: FSHD · Sponsor: University of Kansas Medical Center
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).
This description comes directly from the study's public registry record.
Michaela Walker, MPH · 913-945-9920 · mwalker20@kumc.edu
Leann Lewis, MSGC · 585-275-7680 · Leann_Lewis@URMC.Rochester.edu
Always discuss trial participation with your own doctor first.
| David Geffen School of Medicine at UCLA | Los Angeles, California, United States | Recruiting |
| Neuromuscular Disorders Program at Stanford University School of Medicine | Stanford, California, United States | Recruiting |
| University of Colorado Anschutz Medical Campus | Aurora, Colorado, United States | Recruiting |
| Univeristy of Florida Gainesville | Gainesville, Florida, United States | Recruiting |
| University of Iowa | Iowa City, Iowa, United States | Recruiting |
| Univeristy of Kansas Medical Center | Kansas City, Kansas, United States | Recruiting |
| Kennedy Krieger Institute | Baltimore, Maryland, United States | Recruiting |
| University of Rochester Medical Center | Rochester, New York, United States | Recruiting |
| Duke University - Lenox Baker Children's Hospital | Durham, North Carolina, United States | Recruiting |
| The Ohio State University Medical Center | Columbus, Ohio, United States | Recruiting |
| Austin Neuromuscular Center | Austin, Texas, United States | Recruiting |
| Univeristy of Texas Southwestern Medical Center | Dallas, Texas, United States | Recruiting |
+ 9 more locations — full list on the registry record.
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Source record: clinicaltrials.gov/study/NCT04635891