Global data pooling aims to unlock secrets of rare muscle disease
NCT ID NCT07443449
First seen Mar 09, 2026 · Last updated Jun 21, 2026 · Updated 16 times
Summary
This study brings together patient registries from 10 countries to analyze data from 700 people with spinal and bulbar muscular atrophy (SBMA). Researchers will look at changes in muscle function, walking ability, and age of symptom onset. The goal is to better understand how the disease progresses over time, which could help guide future research and care.
Disclaimer
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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.
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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Fondazione IRCCS Istituto Neurologico Carlo Besta
Milan, 20133, Italy
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 could lead to a better understanding of how SBMA progresses over time, helping design future treatments.
What could go wrong
This is a retrospective observational study, not a treatment trial. It cannot test new therapies, and results may be limited by differences in how data was collected across countries.
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.