Landmark study maps devastating rare disease in children

NCT ID NCT04041102

Summary

This study aimed to understand how the rare and fatal genetic disorder GM1 gangliosidosis progresses in children. Researchers followed 31 children with the condition for up to 3 years, collecting detailed health information every 6 months. The goal was to create a detailed picture of the disease's course to help design better future treatment trials.

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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.