Gene therapy trial for rare muscle disease halted after severe side effects

NCT ID NCT03199469

First seen Nov 01, 2025 · Last updated May 13, 2026 · Updated 25 times

Summary

This study tested a gene therapy called AT132 for children under 5 with a rare, serious muscle disease (XLMTM) that causes breathing problems. The goal was to see if the therapy could reduce the need for breathing machines. However, the study was stopped early because some children had severe complications, including deaths. The 27 children who received the treatment are being followed for 10 years to monitor safety and muscle function.

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Contacts and locations

Locations

  • Ann & Robert H Lurie Children's Hospital of Chicago

    Chicago, Illinois, 60611, United States

  • Hopital Armad Trousseau

    Paris, 75012, France

  • Hospital for Sick Children

    Toronto, Ontario, M5G0A4, Canada

  • Kinderklinik und Kinderpoliklinik im Dr. Von Haunerschen Kinderspital Klinikum der Universitat Munchen

    München, 80337, Germany

  • National Institute of Neurological Disorders and Stroke/NIH Porter

    Bethesda, Maryland, 208892, United States

  • UCLA Medical Center

    Los Angeles, California, 90095, United States

Conditions

Explore the condition pages connected to this study.