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Rare disease mystery: researchers track GSD VI and GSD IX over time

NCT ID NCT04454216

Recruiting now Knowledge-focused Sponsor: Duke University Source: ClinicalTrials.gov ↗

First seen May 18, 2026 · Last updated Jun 17, 2026 · Updated 6 times

Summary

This study aims to collect and review medical information from people with Glycogen Storage Disease Type VI (GSD VI) or Type IX (GSD IX) during their regular clinic visits. By gathering data on disease progression, genetic types, and symptoms, researchers hope to better understand these rare conditions. Up to 400 participants of all ages with a confirmed diagnosis are eligible.

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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

Study contacts

  • Contact

    Phone: •••-•••-•••• Email: •••••@•••••

  • Contact

    Phone: •••-•••-•••• Email: •••••@•••••

Locations

  • Duke University

    RECRUITING

    Durham, North Carolina, 27710, United States

    Contact Phone: •••-•••-•••• Email: •••••@•••••

    Contact Phone: •••-•••-•••• Email: •••••@•••••

Conditions

The condition(s) this trial relates to.

glycogen storage disease IX glycogen storage disease IXa1 glycogen storage disease IXa2 glycogen storage disease IXb glycogen storage disease IXc glycogen storage disease VI Glycogen Storage Disease, Type IXA2

As listed by the trial registrant

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

GLYCOGEN STORAGE DISEASE IXA1 GLYCOGEN STORAGE DISEASE IXA2 GLYCOGEN STORAGE DISEASE IXB GLYCOGEN STORAGE DISEASE IXC GLYCOGEN STORAGE DISEASE VI GSD 6 GSD 9 (ALL SUBTYPES)