Hope for rare brain disease: new drug targets motor decline

NCT ID NCT04849741

First seen Dec 10, 2025 · Last updated May 14, 2026 · Updated 21 times

Summary

This study tests an experimental drug called zilganersen (ION373) in 54 people with Alexander disease, a rare brain disorder. The drug is given via spinal injection and aims to improve or stabilize walking and other motor functions. Participants are aged 2 to 65 and must have a confirmed GFAP gene mutation.

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Contacts and locations

Locations

  • Amsterdam Universitair Medische Centra - Academisch Medisch Centrum

    Amsterdam, North Holland, 1105 AZ, Netherlands

  • Children's Hospital of Atlanta

    Atlanta, Georgia, 30329, United States

  • Children's Hospital of Philadelphia

    Philadelphia, Pennsylvania, 19104, United States

  • Great Ormond Street Hospital for Children NHS Foundation Trust

    London, WC1N 3JH, United Kingdom

  • Lucile Packard Children's Hospital Stanford

    Palo Alto, California, 94304, United States

  • Massachusetts General Hospital

    Boston, Massachusetts, 02114, United States

  • McGill University Health Centre

    Montreal, Quebec, H3A 0G4, Canada

  • Murdoch Children's Research Institute

    Parkville, Victoria, 3052, Australia

  • National Center of Neurology and Psychiatry

    Tokyo, Kodaira-shi, 187-8551, Japan

  • Ospedale Pediatrico Bambino Gesù

    Roma, 165, Italy

  • Ospedale dei Bambini Vittore Buzzi

    Milan, 20154, Italy

  • Pediatric Neurology Institute, Dana-Dwek Children's Hospital, Tel Aviv Sourasky Medical Center

    Tel Aviv, 6423906, Israel

  • University College London Hospitals NHS Foundation Trust

    London, WC1N 3BG, United Kingdom

Conditions

Explore the condition pages connected to this study.