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Can a massive patient database unlock new treatments for muscular dystrophy?

NCT ID NCT04972604

Knowledge-focused Sponsor: CureDuchenne 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
Running, but no longer taking on new participants.
Completed This study
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 Results may not be published yet.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This status has not been confirmed recently, so it may be out of date.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 Jul 24, 2026 · Last updated Jul 24, 2026

Summary

This project creates a central repository of medical records, genetic test results, and patient-reported information from people with Duchenne or Becker muscular dystrophy, as well as carriers. Anyone aged 4 weeks or older with a confirmed diagnosis can join. The goal is to provide researchers with a rich resource to better understand these conditions and develop future therapies.

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
By building a rich database of patient data and samples, this resource could speed up the development of new treatments for Duchenne and Becker muscular dystrophy.
What could go wrong
This is a registry, not a treatment trial, so it does not directly test any therapy. Its value depends on how many people join and how well the data is used by researchers.

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

240 people

The number who actually took part.

Started

Jul 2021

Finished

Dec 2025

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

Individuals with or carriers of Duchenne muscular dystrophy (DMD) and Becker muscular dystrophy (BMD).

Ages

4 weeks and older

Sex

Anyone

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: 1. Any of the following are true: 1. Currently has a confirmed diagnosis of DMD/BMD based on genetic testing, muscle biopsy, or clinical diagnosis. 2. Currently has a confirmed diagnosis of carrier status for DMD/BMD based on genetic testing. 2. Parent/guardian (for minor participants) or participant gives informed consent and/or assent as required by local regulations. 3. Is age 4 weeks or older at the time of consent. Exclusion Criteria: 1. Is a foster child or ward of the state. 2. Is a prisoner.

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Conditions

The condition(s) this trial relates to.

Becker muscular dystrophy Duchenne muscular dystrophy

As listed by the trial registrant

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

Becker muscular dystrophy Duchenne muscular dystrophy

Contacts and locations

Locations

  • Arkansas Children's Hospital

    Little Rock, Arkansas, 72202, United States

  • Children's Hospital of Orange County

    Orange, California, 92868, United States

  • Corewell Health

    Grand Rapids, Michigan, 49503, United States

  • CureDuchenne

    Newport Beach, California, 92660, United States

  • Kansas University Clinical Research Center

    Fairway, Kansas, 66205, United States

  • Neurology Rare Disease Center

    Denton, Texas, 76208, United States

  • Penn State Health

    Hershey, Pennsylvania, 17033, United States

  • Rare Disease Research

    Atlanta, Georgia, 30329, United States

  • Rare Disease Research Center

    Hillsborough, North Carolina, 27278, United States

  • University of Iowa

    Iowa City, Iowa, 52242, United States

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