New study aims to unlock secrets of rare muscle disease

NCT ID NCT04944940

Recruiting now Knowledge-focused Sponsor: National Institute of Neurological Disorders and Stroke (NINDS) Source: ClinicalTrials.gov ↗

First seen Jun 26, 2026 · Last updated Aug 14, 2026 · Updated 3 times

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.

This is an AI summary of the original study and may miss details. Read our disclaimer.

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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.

KENNEDYS DISEASE MOTOR NEURON DISEASE SPINAL AND BULBAR MUSCULAR ATROPHY

Contacts and locations

Locations

National Institutes of Health Clinical Center
RECRUITING

Bethesda, Maryland, 20892, United States

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