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The Duchenne Registry for Duchenne and Becker Muscular Dystrophy

The Duchenne Registry is an online registry for individuals with Duchenne muscular dystrophy (DMD), Becker muscular dystrophy (BMD), and female carriers. This registry helps connect patients with clinical trials and research studies, and provides education about care and research for these conditions. It also serves as a valuable resource for researchers by providing de-identified (anonymous) patient information, which is crucial for advancing treatments. The main goal is to track genetic variants (changes in genes) over a person's lifetime, with updates requested every 6-12 months. You can join if you have a diagnosis of Duchenne or Becker muscular dystrophy, or if you are a manifesting or asymptomatic female carrier.

Study design
This is an observational study, meaning it collects information without testing a specific intervention. It aims to enroll 10,000 participants.
What's involved
You would be asked to update your medical history every 6-12 months.
Compensation
Not stated in the trial record.
Follow-up
Participants will be followed throughout their lifetime.

AI-generated from the public study record. Only the study team can confirm whether you're eligible — confirm details with them before making decisions.

NCT02069756

The Duchenne Registry

Recruiting
Not specifiedAll AgesObservational
The Duchenne Registry
~10,000 participants
Updated 2026-05-08 on ClinicalTrials.gov

At a glance

Recruiting sites
1 of 1 listed site is recruiting right now
RecruitingSuspended, closed, or not yet open
What they're measuring
Genetic variant
Measured over Registrants are requested to update their medical history every 6-12 months, and they will be followed throughout their lifetime.

Conditions

Duchenne Muscular Dystrophy
Becker Muscular Dystrophy
Dystrophinopathy
Dystrophinopathy Symptomatic Female Carrier
Dystrophinopathy Female Carrier

Explore related trials

Becker's Muscular DystrophyDuchenne Muscular DystrophyDystrophinopathy Female Carrier

NCT02069756

Where you'd take part

This study runs at 1 site. They're the same protocol — you choose where, and that choice sets who your contact draft is addressed to.

  • The Duchenne Registry / PPMD

    Washington D.C., District of Columbiastudy coordinator listed

    Recruiting

Sites open and close at different times, so the status above is per site — it can differ from the study's overall status.

Who to contact

Ann Martin, MS, CGC
[email protected]
888-520-8675
Email the study team

Opens a ready-to-send draft in your own email app — review before sending.

Want this trial checked against your situation?

Add a private profile and we'll compare every criterion below against your situation — and tell you which ones are met, uncertain, or excluding.

Check eligibility for this trial ~2 min · HIPAA-protected · delete anytime
Eligibility criteria

Inclusion

Diagnosis of Duchenne or Becker muscular dystrophy; Manifesting female carriers and asymptomatic female carriers also included in registry.

Exclusion

Diagnosis of any other type of muscular dystrophy (including limb-girdle muscular dystrophy).

What this trial measures

  • Genetic variantRegistrants are requested to update their medical history every 6-12 months, and they will be followed throughout their lifetime.

    Genetic variant data is collected by patient report and verified by curation/review of genetic test report when provided. Genetic test report is requested for each registrant and is required for participation in global DMD (TREAT-NMD) registry.