Recruiting

Duchenne Registry

Sponsor:

The Duchenne Registry

Code:

NCT02069756

Conditions

Duchenne Muscular Dystrophy

Becker Muscular Dystrophy

Dystrophinopathy

Dystrophinopathy Symptomatic Female Carrier

Dystrophinopathy Female Carrier

Eligibility Criteria

Sex: All

Age: 0+

Healthy Volunteers: Not accepted

Study Details

Brief summary:

The Duchenne Registry is an online, patient-report registry for individuals with Duchenne and Becker muscular dystrophy and carrier females. The purpose of the Registry is to connect Duchenne and Becker patients with actively recruiting clinical trials and research studies, and to educate patients and families about Duchenne and Becker care and research. At the same time, The Duchenne Registry is a valuable resource for clinicians and researchers in academia and industry, allowing access to de-identified datasets provided by patients and their families-information that is vital to advances in the care and treatment of Duchenne. The Duchenne Registry is a member of the TREAT-NMD Neuromuscular Network.

Conditions

Duchenne Muscular Dystrophy

Becker Muscular Dystrophy

Dystrophinopathy

Dystrophinopathy Symptomatic Female Carrier

Dystrophinopathy Female Carrier

Study ID

NCT02069756

Start date

Oct, 2007

Status verified date

May, 2026

Completion date

Oct, 2047

Anticipated

Primary completion date

Oct, 2027

Anticipated

Eligibility Criteria

Eligibility Criteria

Sex: All

Age: 0+

Healthy Volunteers: Not accepted

Inclusion Criteria:

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

Exclusion Criteria:

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

Study Design

Enrollment

10000 participants

Anticipated

Interventions and Outcome Measures

Arms

Duchenne and Becker Muscular Dystrophy

Patients with Duchenne or Becker Muscular Dystrophy, as well as carrier females.

Primary outcome measure

  • Genetic variant [ Time Frame: Registrants are requested to update their medical history every 6-12 months, and they will be followed throughout their lifetime. ]

Central Contacts and Locations

Central contacts

Ann Martin, MS, CGC

888-520-8675coordinator@duchenneregistry.org

Lauren Bogue, MS, CGC

888-520-8675coordinator@duchenneregistry.org

Locations

The Duchenne Registry / PPMD

Recruiting

Washington D.C., District of Columbia, United States, 20005

Contacts

Ann Martin, MS, CGC

888-520-8675coordinator@duchenneregistry.org

Lauren Bogue, MS, CGC

888-520-8675coordinator@duchenneregistry.org

More Information

Sponsor

The Duchenne Registry

Last update posted

May 8, 2026

Last verified

May, 2026

Keywords

  • Duchenne
  • Becker
  • Muscular Dystrophy

Trial information was received from ClinicalTrials.gov and was last updated on 2026-09-10. This information was provided to ClinicalTrials.gov by The Duchenne Registry on 2026-05-08.