Researchers launch Largest-Ever natural history study for rare GSD types
NCT ID NCT04454216
First seen Jun 25, 2026 · Last updated Jun 27, 2026 · Updated 1 time
Summary
This study is collecting medical information from 400 people with Glycogen Storage Disease Type VI or Type IX to learn how these rare liver conditions progress over time. Researchers will review patient records from clinic visits to track disease changes, genetic types, and lab results. No new treatments are being tested—the goal is simply to better understand these diseases.
What this could mean
Our plain-language read of the trial. This is informational only — not medical advice or a prediction.
- What this could lead to
- If this study succeeds, it could provide doctors with a clearer picture of how GSD VI and GSD IX progress, helping to improve future care and monitoring for patients.
- What could go wrong
- This is an observational study that only reviews existing medical records, so it does not test any new treatment. The results may not apply to all patients, and no direct benefit to participants is expected.
This is an AI summary of the original study and may miss details. Read our disclaimer.
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Conditions
The condition(s) this trial relates to.
As listed by the trial registrant
The condition terms exactly as the trial's registrant entered them.
Contacts and locations
Locations
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Duke University
RECRUITINGDurham, North Carolina, 27710, United States
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Other studies related to the condition(s) this trial covers.