Gene therapy trial aims to help girls with rett syndrome gain new skills

NCT ID NCT05898620

First seen Jun 25, 2026 · Last updated Jun 27, 2026 · Updated 1 time

Summary

This study tests a gene therapy called NGN-401 in 33 girls with Rett syndrome, a rare genetic disorder that affects development and movement. The therapy delivers a working copy of the MECP2 gene to try to improve skills and daily function. Researchers will measure success by whether participants show any improvement and gain at least one new milestone from a list of 28 skills.

What this could mean

Our plain-language read of the trial. This is informational only — not medical advice or a prediction.

Active substance

NGN-401 (a gene therapy using a harmless virus to deliver a working copy of the MECP2 gene)

What this could lead to

If successful, this could become a treatment that helps girls with Rett syndrome gain new skills and improve their daily lives.

What could go wrong

This is an early-stage, small trial (33 people) with no placebo group, so results may not be definitive. Gene therapies can have side effects like immune reactions or liver issues.

Disclaimer Read more

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 — we know it does not capture everything.

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Conditions

The condition(s) this trial relates to.

hereditary disease intellectual disability nervous system disorder Neurobehavioral Manifestations neurodevelopmental disorder Neurologic Manifestations Pathologic Processes Rett syndrome X-linked disease

As listed by the trial registrant

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

Contacts and locations

Locations

  • 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

  • Kennedy Krieger Institute

    Baltimore, Maryland, 21205, United States

  • Manchester University NHS Foundation Trust

    Manchester, M13 9WL, United Kingdom

  • Montefiore Medical Center

    New York, New York, 10467, United States

  • Nationwide Children's Hospital

    Columbus, Ohio, 43205, United States

  • Nicklaus Children's Hospital Research Institute

    Miami, Florida, 33155, United States

  • Royal Hospital for Children and Young People

    Edinburgh, EH16 4TJ, United Kingdom

  • Rush University Medical Center

    Chicago, Illinois, 60612, United States

  • Texas Children's Hospital

    Houston, Texas, 77030, United States

  • The Children's Hospital at Westmead

    Sydney, New South Wales, Australia

  • UCSF Benioff Children's Hospital Oakland

    Oakland, California, 94609, United States

  • UNC at Chapel Hill

    Chapel Hill, North Carolina, 27514, United States

  • University of Alabama at Birmingham

    Birmingham, Alabama, 35233, United States

  • Vanderbilt University Medical Center

    Nashville, Tennessee, 37232, United States