One-Time gene therapy helps babies with fatal muscle disease sit and survive

NCT ID NCT03306277

First seen Jan 28, 2026 · Last updated Apr 30, 2026 · Updated 15 times

Summary

This study tested a one-time gene therapy (AVXS-101) in 22 infants under 6 months old with spinal muscular atrophy type 1, a severe muscle-weakening disease. The goal was to see if the treatment helped babies sit independently for at least 30 seconds and survive without needing permanent breathing support. Results showed significant improvements in both sitting ability and survival compared to natural history.

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Contacts and locations

Locations

  • Ann and Robert H Lurie Children's Hospital

    Chicago, Illinois, 60611, United States

  • Boston Children's Hospital

    Boston, Massachusetts, 02115, United States

  • Children's Hospital Colorado

    Aurora, Colorado, 80045, United States

  • Children's Hospital of Philadelphia

    Philadelphia, Pennsylvania, 19104, United States

  • Columbia University

    New York, New York, 10032, United States

  • David Geffen School of Medicine at UCLA

    Los Angeles, California, 90095, United States

  • Duke University

    Durham, North Carolina, 27713, United States

  • Johns Hopkins Pediatric Neurology

    Baltimore, Maryland, 21287, United States

  • Nationwide Children's Hospital

    Columbus, Ohio, 43205, United States

  • Nemours Children's Hospital

    Orlando, Florida, 32827, United States

  • Oregon Health and Science University

    Portland, Oregon, 97239, United States

  • Stanford University

    Stanford, California, 94305, United States

  • University of Texas Southwestern Medical Center

    Dallas, Texas, 75235, United States

  • University of Utah

    Salt Lake City, Utah, 84112, United States

  • University of Wisconsin (Madison)

    Madison, Wisconsin, 53792, United States

  • Washington Unviersity School of Medicine

    St Louis, Missouri, 63110, United States

Conditions

Explore the condition pages connected to this study.