Researchers launch Largest-Ever natural history study for rare GSD types
NCT ID NCT04454216
First seen May 18, 2026 · Last updated Jun 15, 2026 · Updated 5 times
Summary
This study gathers medical information from 400 people with Glycogen Storage Disease Type VI or Type IX to better understand how these rare conditions progress. Participants simply allow researchers to review their existing clinic records. The goal is to identify patterns in symptoms, genetics, and lab results to improve future care.
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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.
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
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Study contacts
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Contact
Phone: •••-•••-•••• Email: •••••@•••••
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Contact
Phone: •••-•••-•••• Email: •••••@•••••
Locations
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Duke University
RECRUITINGDurham, North Carolina, 27710, United States
Contact Phone: •••-•••-•••• Email: •••••@•••••
Contact Phone: •••-•••-•••• Email: •••••@•••••
Conditions
Explore the condition pages connected to this study.