New study aims to unlock secrets of rare muscle disease

NCT ID NCT04944940

First seen Jun 26, 2026 · Last updated Jun 27, 2026 · Updated 1 time

Summary

This observational study is looking at men with spinal and bulbar muscular atrophy (SBMA), a rare inherited disease that causes gradual muscle weakness. Researchers will track changes in muscle strength, imaging scans, and blood or spinal fluid markers over two years. The goal is to find reliable ways to measure disease progression, which could help in future treatment studies. Participants with SBMA will have five visits over two years, while healthy volunteers will have one.

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 identify reliable ways to measure SBMA progression, which may help design future treatment trials.

What could go wrong

This is an observational study with no treatment being tested. It may not lead directly to any therapy, and results may not apply to all patients.

Disclaimer Read more

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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Conditions

The condition(s) this trial relates to.

Kennedy disease motor neuron disorder

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

Contacts and locations

Study contacts

  • Contact

    Phone: •••-•••-•••• Email: •••••@•••••

  • Contact

    Phone: •••-•••-•••• Email: •••••@•••••

Locations

  • National Institutes of Health Clinical Center

    RECRUITING

    Bethesda, Maryland, 20892, United States

    Contact Phone: •••-•••-•••• Email: •••••@•••••