Researchers to watch rare muscle disease progression without treatment

NCT ID NCT06210672

First seen Nov 01, 2025 · Last updated May 20, 2026 · Updated 26 times

Summary

This study aims to learn more about how gamma-sarcoglycanopathy (LGMDR5) changes over time. It will follow people aged 6 to 35 with a confirmed diagnosis for up to 24 months, measuring muscle function, breathing, and daily activity. No new treatments are tested; the goal is to gather information to help design future studies.

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Contacts and locations

Locations

  • Hedi Chaker Hospital Child Neurology Department

    Sfax, Tunisia

  • Hopital Raymond Poincare

    Garches, 92380, France

  • National Institute Mongi Ben Hmida of Neurology

    Tunis, Tunisia

Conditions

Explore the condition pages connected to this study.