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450 FSHD patients join Long-Term study to unlock better treatments

NCT ID NCT04635891

Knowledge-focused Sponsor: University of Kansas Medical Center Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now This study
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing
Running, but no longer taking on new participants.
Completed
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

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.

This is an AI summary of the original study and may miss details. Read our disclaimer.

Study facts

What this study's own registry entry says, in plain language.

Participants

About 450 people

The number the study aims to enrol. It can still change while the study runs.

Started

Dec 2020

Expected to finish

Jan 2028

An estimate. End dates often move.

Lead sponsor

Other sponsor

The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Who is studied

Participants with FSHD that are seen in the researchers clinic. This study is meant to be 'inclusive' and cover the full range of clinical FSHD: including children and adults, all ranges of abilities (ambulatory and non-ambulatory), and both genetic types of FSHD.

Ages

Children (under 18), adults (18 to 64) and older adults (65 and over)

Sex

Anyone

Healthy volunteers

Not accepted

This study is not open to healthy volunteers. The entry requirements below say who it is open to.

Show the full entry requirements

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

Inclusion Criteria: * Genetically confirmed FSHD (types 1 or 2) or clinical diagnosis of FSHD with characteristic findings on exam and an affected parent or offspring. Exclusion Criteria: * Unwilling or unable to provide informed consent. * Any other medical condition which in the opinion of the investigator would interfere with study participation.

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Conditions

The condition(s) this trial relates to.

facioscapulohumeral muscular dystrophy

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

FSHD

How to take part

Only the study team decides who joins. These are the ways to reach them.

  1. The study's own enquiry address

    This study publishes an address for enquiries. See it below .

  2. The places running it

    21 sites in 4 countries. The list below names each one and where it is.

  3. The official record

    ClinicalTrials.gov lists the study team's own contact details, including names and phone numbers. We don't republish those.

    Open the record ↗

  4. A doctor treating you

    A doctor who knows your case can contact a study site on your behalf, and can tell you whether this study is worth pursuing at all.

Contacts and locations

Locations

  • Austin Neuromuscular Center

    RECRUITING

    Austin, Texas, 78759, United States

  • David Geffen School of Medicine at UCLA

    RECRUITING

    Los Angeles, California, 90095, United States

  • Duke University - Lenox Baker Children's Hospital

    RECRUITING

    Durham, North Carolina, 27705, United States

  • Kennedy Krieger Institute

    RECRUITING

    Baltimore, Maryland, 21205, United States

  • Neuromuscular Disorders Program at Stanford University School of Medicine

    RECRUITING

    Stanford, California, 94306, United States

    Contact Email: •••••@•••••

  • Ottawa Hospital Research Institute

    RECRUITING

    Ottawa, Ontario, K1y 4e9, Canada

  • Sheffield Teaching Hospital

    RECRUITING

    Sheffield, South Yorkshire, S10 2JF, United Kingdom

  • The Ohio State University Medical Center

    RECRUITING

    Columbus, Ohio, 43221, United States

  • Univeristy of Florida Gainesville

    RECRUITING

    Gainesville, Florida, 32608, United States

  • Univeristy of Kansas Medical Center

    RECRUITING

    Kansas City, Kansas, 66160, United States

  • Univeristy of Texas Southwestern Medical Center

    RECRUITING

    Dallas, Texas, 75390, United States

  • University of Calgary

    NOT_YET_RECRUITING

    Calgary, Alberta, T2N1N4, Canada

  • University of Colorado Anschutz Medical Campus

    RECRUITING

    Aurora, Colorado, 80045, United States

    Contact Email: •••••@•••••

  • University of Iowa

    RECRUITING

    Iowa City, Iowa, 52242, United States

  • University of McGill

    NOT_YET_RECRUITING

    Montreal, Quebec, H3A 2B4, Canada

  • University of Rochester Medical Center

    RECRUITING

    Rochester, New York, 14642, United States

  • University of Sao Paulo

    RECRUITING

    São Paulo, Brazil

  • University of Texas Health San Antonio

    NOT_YET_RECRUITING

    San Antonio, Texas, 78229, United States

  • University of Utah

    RECRUITING

    Salt Lake City, Utah, 84132, United States

  • University of Washington Medical Center

    RECRUITING

    Seattle, Washington, 98195, United States

  • Virginia Commonwealth University

    RECRUITING

    Richmond, Virginia, 23219, United States

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