Scientists track rare muscle disease to unlock its secrets
NCT ID NCT01417533
First seen Jun 27, 2026 · Last updated Jul 29, 2026 · Updated 6 times
Summary
This study followed 78 people with GNE myopathy, a rare genetic disease that causes progressive muscle weakness starting in young adulthood. Researchers collected medical history, blood samples, and muscle function tests over up to two years to understand how the disease progresses. No treatment was given; the goal was to learn more about the condition and identify useful markers for future studies.
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 successful, this study could help identify key markers of disease progression, paving the way for future treatment trials.
- What could go wrong
- This is an observational study, not a treatment trial, so it offers no direct benefit to participants. Results may not lead to immediate therapies.
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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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National Institutes of Health Clinical Center
Bethesda, Maryland, 20892, United States
More trials for these conditions
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