Study Overview
This clinical trial focuses on testing the efficacy of different digital interventions to promote re-engagement in cancer-related long-term follow-up care for adolescent and young adult (AYA) survivors of childhood cancer.
Description
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).
Official Title
Motor Outcomes to Validate Evaluations in FSHD (MOVE FSHD)
Quick Facts
Study Start:2020-12-15
Study Completion:2028-01
Study Type:Not specified
Phase:Not Applicable
Enrollment:Not specified
Status:RECRUITING
Participation Criteria
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.
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Contacts and Locations
Study Locations (Sites)
David Geffen School of Medicine at UCLA
Los Angeles, California, 90095
United States
Neuromuscular Disorders Program at Stanford University School of Medicine
Stanford, California, 94306
United States
University of Colorado Anschutz Medical Campus
Aurora, Colorado, 80045
United States
Univeristy of Florida Gainesville
Gainesville, Florida, 32608
United States
University of Iowa
Iowa City, Iowa, 52242
United States
Univeristy of Kansas Medical Center
Kansas City, Kansas, 66160
United States
Kennedy Krieger Institute
Baltimore, Maryland, 21205
United States
University of Rochester Medical Center
Rochester, New York, 14642
United States
The Ohio State University Medical Center
Columbus, Ohio, 43221
United States
Austin Neuromuscular Center
Austin, Texas, 78759
United States
Univeristy of Texas Southwestern Medical Center
Dallas, Texas, 75390
United States
University of Texas Health San Antonio
San Antonio, Texas, 78229
United States
University of Utah
Salt Lake City, Utah, 84132
United States
Virginia Commonwealth University
Richmond, Virginia, 23219
United States
University of Washington Medical Center
Seattle, Washington, 98195
United States
Collaborators and Investigators
Sponsor: University of Kansas Medical Center
- Jeffrey Statland, MD, PRINCIPAL_INVESTIGATOR, University of Kansas Medical Center
- Rabi Tawil, MD, PRINCIPAL_INVESTIGATOR, University of Rochester
Study Record Dates
These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.
Study Registration Dates
Study Start Date2020-12-15
Study Completion Date2028-01
Study Record Updates
Study Start Date2020-12-15
Study Completion Date2028-01
Terms related to this study
Additional Relevant MeSH Terms