UK study tracks rare muscle disease to pave way for future treatments
NCT ID NCT06670378
First seen May 06, 2026 · Last updated May 21, 2026 · Updated 5 times
Summary
This study follows 45 people with nemaline myopathy in the UK to understand how the disease naturally progresses. Researchers collect medical exams, quality-of-life surveys, and physical and breathing tests. The goal is to find the best ways to measure the disease in future treatment trials.
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This is a summary of
the original study
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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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Locations
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Department of Paediatric Neurology - Neuromuscular Service, Evelina Children's Hospital
London, United Kingdom
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Dubowitz Neuromuscular Centre, UCL Great Ormond Street Hospital
London, United Kingdom
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John Walton Muscular Dystrophy Research Centre, Newcastle University
Newcastle, United Kingdom
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MDUK Oxford Neuromuscular Centre, University of Oxford
Oxford, United Kingdom
Conditions
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