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Global data pooling aims to unlock secrets of rare muscle disease

NCT ID NCT07443449

Knowledge-focused Sponsor: Fondazione I.R.C.C.S. Istituto Neurologico Carlo Besta Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing This study
Running, but no longer taking on new participants.
Completed
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

First seen Jun 27, 2026 · Last updated Jun 27, 2026

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.

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.

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

Study facts

What this study's own registry entry says, in plain language.

Participants

700 people

The number who actually took part.

Started

Jul 2024

Expected to finish

Dec 2026

An estimate. End dates often move.

Lead sponsor

Other sponsor

The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Who is studied

700 SBMA affected individuals

Ages

18 years and older

Sex

Male participants only

Healthy volunteers

Not accepted

This study is not open to healthy volunteers. The entry requirements below say who it is open to.

Show the full entry requirements

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

Inclusion Criteria: * Individuals affected by SBMA for whom clinical data have been historically collected by the referral centres Exclusion Criteria: * na

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Conditions

The condition(s) this trial relates to.

Kennedy disease

As listed by the trial registrant

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

SBMA Spinal and bulbar muscular atrophy (SBMA)

Contacts and locations

Locations

  • Fondazione IRCCS Istituto Neurologico Carlo Besta

    Milan, 20133, Italy