Gne myopathy
Clinical trials for Gne myopathy explained in plain language.
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Scientists track rare muscle disease to unlock its secrets
Knowledge-focused CompletedThis 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 progress…
Matched conditions: GNE MYOPATHY
Sponsor: National Human Genome Research Institute (NHGRI) • Aim: Knowledge-focused
Last updated Sep 18, 2026 00:00 UTC
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Can a global patient registry unlock the secrets of a rare muscle disease?
Knowledge-focused CompletedThis study is building an international registry of people with GNE myopathy, an ultra-rare muscle disease that causes progressive weakness and often leads to wheelchair use. Participants will complete online questionnaires about their symptoms, medical history, quality of life, …
Matched conditions: GNE MYOPATHY
Sponsor: Newcastle University • Aim: Knowledge-focused
Last updated Aug 19, 2026 00:00 UTC