New hope for FSHD: Long-Term drug safety trial underway

NCT ID NCT06547216

First seen Jun 27, 2026 ยท Last updated Jun 27, 2026

Summary

This study is for people with FSHD, a genetic disease that causes muscle weakness. It tests the long-term safety and how well the body tolerates a drug called AOC 1020, given through a vein. About 84 adults who completed a previous study will take part. The main goal is to check for side effects over time.

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This is a summary of the original study . Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary โ€” we know it does not capture everything.

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Conditions

The condition(s) this trial relates to.

facioscapulohumeral muscular dystrophy facioscapulohumeral muscular dystrophy 1 facioscapulohumeral muscular dystrophy 2 frontometaphyseal dysplasia frontometaphyseal dysplasia 2 muscular dystrophy progressive muscular dystrophy

As listed by the trial registrant

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

Contacts and locations

Locations

  • Duke University

    Durham, North Carolina, 27708, United States

  • Kansas University Medical Center

    Kansas City, Kansas, 66205, United States

  • Ohio State University

    Columbus, Ohio, 43221, United States

  • Rare Disease Research

    Atlanta, Georgia, 30329, United States

  • Stanford University

    Palo Alto, California, 94304, United States

  • University College London

    London, WIT 7HA, United Kingdom

  • University of California Los Angeles

    Los Angeles, California, 90095, United States

  • University of California San Diego

    San Diego, California, 92093, United States

  • University of Colorado

    Denver, Colorado, 80045, United States

  • University of Florida

    Gainesville, Florida, 32608, United States

  • University of Ottawa

    Ottawa, Ontario, K1Y 4E9, Canada

  • University of Pennsylvania

    Philadelphia, Pennsylvania, 19104, United States

  • University of Rochester Medical Center

    Rochester, New York, 14642, United States

  • University of Sheffield

    Sheffield, S10 2TN, United Kingdom

  • University of Texas Southwestern

    Dallas, Texas, 75390, United States

  • University of Washington

    Seattle, Washington, 98104, United States

  • Virginia Commonwealth University

    Richmond, Virginia, 23298, United States