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).
FSHD
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).
Motor Outcomes to Validate Evaluations in FSHD (MOVE FSHD)
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David Geffen School of Medicine at UCLA, Los Angeles, California, United States, 90095
Neuromuscular Disorders Program at Stanford University School of Medicine, Stanford, California, United States, 94306
University of Colorado Anschutz Medical Campus, Aurora, Colorado, United States, 80045
Univeristy of Florida Gainesville, Gainesville, Florida, United States, 32608
University of Iowa, Iowa City, Iowa, United States, 52242
Univeristy of Kansas Medical Center, Kansas City, Kansas, United States, 66160
Kennedy Krieger Institute, Baltimore, Maryland, United States, 21205
University of Rochester Medical Center, Rochester, New York, United States, 14642
The Ohio State University Medical Center, Columbus, Ohio, United States, 43221
Austin Neuromuscular Center, Austin, Texas, United States, 78759
Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.
For general information about clinical research, read Learn About Studies.
to
ALL
No
University of Kansas Medical Center,
Jeffrey Statland, MD, PRINCIPAL_INVESTIGATOR, University of Kansas Medical Center
Rabi Tawil, MD, PRINCIPAL_INVESTIGATOR, University of Rochester
2028-01