Gene therapy offers hope for kids with rare NGLY1 disorder

NCT ID NCT06199531

First seen May 05, 2026 · Last updated May 23, 2026 · Updated 5 times

Summary

This study tests a one-time gene therapy called GS-100 in 10 children aged 2 to 18 with NGLY1 deficiency, a rare genetic condition. The therapy is given directly into the brain fluid to deliver a working copy of the missing gene. Researchers will check if it safely improves motor skills and development over a year.

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.

Get updates

Get notified about this study

Sign up to get updates when this study changes or when new studies for NGLY1 DEFICIENCY are added.

Our safety recommendation!

By submitting, you agree to our Terms of use

Contacts and locations

Locations

  • Oakland Children's Hospital (UCSF Benioff)

    Oakland, California, 94609, United States

  • Texas Children's Hospital (Baylor College of Medicine)

    Houston, Texas, 77030, United States

Conditions

Explore the condition pages connected to this study.