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New study tracks rare muscle disease without offering treatment

NCT ID NCT05046821

Knowledge-focused Sponsor: University of California, Irvine Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now
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 This study
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 Results may not be published yet.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This status has not been confirmed recently, so it may be out of date.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 150 adults with sporadic inclusion body myositis (sIBM) for two years to see how the disease progresses. Participants visit the clinic every six months for tests like muscle strength, breathing, and swallowing. No treatments are given—the goal is to learn more about the disease to help design future studies.

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

150 people

The number who actually took part.

Started

Oct 2021

Expected to finish

Mar 2027

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

Paticipants age 40 and older with sporadic IBM, diagnosed according to established criteria.

Ages

40 years and older

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: 1. Ages 40 years and older 2. Fulfills ENMC 2011 criteria of clinically definite or probable sporadic Inclusion body myositis (sIBM) 3. Disease onset is within the past 10 years of the time of Baseline visit 4. Able to participate and comply with study related procedures 5. Able to provide written consent Exclusion Criteria: 1. Current or very recent use (within last 6 months of the Baseline visit) of immunomodulation or immunosuppression therapy. 2. Current or very recent use (within last 90 days of the Baseline visit) of an investigational medication or therapy. 3. Co-existing significant medical or surgical conditions that, in the opinion of the investigator, will influence study participation or alter natural history.

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Conditions

The condition(s) this trial relates to.

inclusion body myositis

As listed by the trial registrant

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

Inclusion body myositis Sporadic inclusion body myositis

Contacts and locations

Locations

  • Brigham and Women's Hospital

    Boston, Massachusetts, 02115, United States

  • Johns Hopkins University

    Baltimore, Maryland, 21287, United States

  • Kansas University Medical Center

    Fairway, Kansas, 66205, United States

  • Nerve and Muscle Center of Texas

    Houston, Texas, 77030, United States

  • Ohio State University

    Columbus, Ohio, 43221, United States

  • Oregon Health & Science University

    Portland, Oregon, 97239, United States

  • University of California, Irvine

    Orange, California, 92868, United States

  • University of California, Los Angeles

    Los Angeles, California, 90095, United States

  • University of Colorado

    Aurora, Colorado, 80045, United States

  • University of Miami

    Miami, Florida, 33136, United States

  • University of Pennsylvania

    Philadelphia, Pennsylvania, 19104, United States

  • University of Washington

    Seattle, Washington, 98195, United States

  • Washington University in St. Louis

    St Louis, Missouri, 63110, United States

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