Rare disease study tracks GM1 progression to pave way for future treatments

NCT ID NCT04041102

First seen Jun 27, 2026 · Last updated Jun 27, 2026

Summary

This study followed 31 children with infantile or juvenile GM1 gangliosidosis, a rare and severe genetic disorder, for up to 3 years. Researchers collected data from exams, blood tests, and developmental assessments to better understand how the disease progresses. The goal was to identify useful markers for future clinical trials, not to test a treatment.

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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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Conditions

The condition(s) this trial relates to.

GM1 gangliosidosis lysosomal storage disease

As listed by the trial registrant

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

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