450 FSHD patients join Long-Term study to unlock better treatments
NCT ID NCT04635891
First seen Jun 27, 2026 · Last updated Jun 27, 2026
Summary
This study follows 450 people with FSHD for at least 3 years to measure how the disease affects walking, arm use, breathing, and other daily activities. The goal is to improve patient care and help researchers design better clinical trials by understanding what changes in movement truly matter to patients. No new treatments are tested—this is an observational study.
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Conditions
The condition(s) this trial relates to.
As listed by the trial registrant
The condition terms exactly as the trial's registrant entered them.
Contacts and locations
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Study contacts
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Contact
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Locations
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Austin Neuromuscular Center
RECRUITINGAustin, Texas, 78759, United States
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David Geffen School of Medicine at UCLA
RECRUITINGLos Angeles, California, 90095, United States
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Duke University - Lenox Baker Children's Hospital
RECRUITINGDurham, North Carolina, 27705, United States
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Kennedy Krieger Institute
RECRUITINGBaltimore, Maryland, 21205, United States
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Neuromuscular Disorders Program at Stanford University School of Medicine
RECRUITINGStanford, California, 94306, United States
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Ottawa Hospital Research Institute
RECRUITINGOttawa, Ontario, K1y 4e9, Canada
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Sheffield Teaching Hospital
RECRUITINGSheffield, South Yorkshire, S10 2JF, United Kingdom
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The Ohio State University Medical Center
RECRUITINGColumbus, Ohio, 43221, United States
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Univeristy of Florida Gainesville
RECRUITINGGainesville, Florida, 32608, United States
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Univeristy of Kansas Medical Center
RECRUITINGKansas City, Kansas, 66160, United States
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Univeristy of Texas Southwestern Medical Center
RECRUITINGDallas, Texas, 75390, United States
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Contact
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Contact Phone: •••-•••-•••• Email: •••••@•••••
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University of Calgary
NOT_YET_RECRUITINGCalgary, Alberta, T2N1N4, Canada
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University of Colorado Anschutz Medical Campus
RECRUITINGAurora, Colorado, 80045, United States
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University of Iowa
RECRUITINGIowa City, Iowa, 52242, United States
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University of McGill
NOT_YET_RECRUITINGMontreal, Quebec, H3A 2B4, Canada
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University of Rochester Medical Center
RECRUITINGRochester, New York, 14642, United States
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University of Sao Paulo
RECRUITINGSão Paulo, Brazil
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University of Texas Health San Antonio
NOT_YET_RECRUITINGSan Antonio, Texas, 78229, United States
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University of Utah
RECRUITINGSalt Lake City, Utah, 84132, United States
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University of Washington Medical Center
RECRUITINGSeattle, Washington, 98195, United States
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Contact Email: •••••@•••••
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Virginia Commonwealth University
RECRUITINGRichmond, Virginia, 23219, United States
Contact Phone: •••-•••-•••• Email: •••••@•••••
Contact
Contact Phone: •••-•••-•••• Email: •••••@•••••
More trials for these conditions
Other studies related to the condition(s) this trial covers.
- New hope for FSHD: Long-Term drug safety trial underway
- New hope for FSHD: experimental drug AOC 1020 completes early testing
- New drug aims to build muscle in rare muscular dystrophy
- FSHD patients unite: new registry aims to accelerate research and care
- Hope for FSHD: new drug enters final stage of testing