Tracking a rare disease: study maps GM1's course to speed future cures

NCT ID NCT04041102

First seen Nov 01, 2025 · Last updated May 14, 2026 · Updated 26 times

Summary

This study followed 31 children with GM1 gangliosidosis, a rare and severe genetic disorder, for up to 3 years. Researchers collected data from exams, blood tests, and imaging to understand how the disease progresses. No treatment was given; the goal was to identify useful markers for future clinical trials.

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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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Contacts and locations

Locations

  • Children's Hospital of Philadelphia

    Philadelphia, Pennsylvania, 19104, United States

  • Gazi University

    Ankara, Turkey (Türkiye)

  • Hospital de Clínicas de Porto Alegre

    Porto Alegre, Brazil

  • Montreal Children's Hospital Research Institute - McGill University

    Montreal, Quebec, Canada

  • UCL Great Ormond Street Institute of Child Health

    London, United Kingdom

  • UCSF Benioff Children's Hospital Oakland

    Oakland, California, 94610, United States

Conditions

Explore the condition pages connected to this study.