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Can MRI scans reveal how ANO5 muscle disease progresses?

NCT ID NCT05206617

Knowledge-focused Sponsor: Rigshospitalet, Denmark 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 Results may not be published yet.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This status has not been confirmed recently, so it may be out of date.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 Aug 12, 2026 · Last updated Aug 13, 2026 · Updated 1 time

Summary

This study follows adults with pathogenic variants in the anoctamin 5 gene, which causes a form of limb-girdle muscular dystrophy. Over three years, researchers will use whole-body MRI to measure changes in muscle fat content, and questionnaires to track fatigue and quality of life. The goal is to understand how the disease progresses and to identify reliable outcome measures for future clinical trials.

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 disease progression, which may help design future clinical trials for treatments.
What could go wrong
This is a small observational study, so results may not apply to all patients. It does not test any treatment, so it cannot directly lead to a cure.

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

17 people

The number who actually took part.

Started

Jan 2018

Expected to finish

Nov 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

Patients with pathogenic variants in the anoctamin 5 gene are recruited from the Copenhagen Neuromuscular Center, Rigshospitalet, in Denmark.

Ages

18 years and older

Sex

Anyone

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: * Pathogenic variant in the anoctamin 5 gene * Age more than 18 years Exclusion Criteria: None

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Conditions

The condition(s) this trial relates to.

Disease Progression limb-girdle muscular dystrophy neuromuscular disease

As listed by the trial registrant

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

Limb girdle muscular dystrophy Neuromuscular diseases

Contacts and locations

Locations

  • Copenhagen Neuromuscular Center

    Copenhagen, Capital Region, 2100, Denmark

More trials for these conditions

Other studies related to the condition(s) this trial covers.