The Duchenne Registry

Part of paid clinical trials in Washington D.C., District of Columbia.

Sponsor
The Duchenne Registry
Study ID
NCT02069756
Status
Recruiting
Apply to this trial

Conditions

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

Eligibility Criteria

Sex
ALL
Age
N/A - N/A
Healthy Volunteers
Not accepted

Study Details

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.

Key Dates

Start date
Oct 31, 2007
Status verified
May 2026
Primary completion
Oct 31, 2027
Completion
Oct 31, 2047

Study Design

Enrollment
10,000 participants (estimated)

Arms

  • Arm: 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

Locations (1)

FacilityCityStateZIPSite coordinators
The Duchenne Registry / PPMDWashington D.C.District of Columbia20005
Ann Martin, MS, CGC
[email protected]
888-520-8675
Lauren Bogue, MS, CGC
[email protected]
888-520-8675

Find similar trials in Washington D.C., DC

By condition
Duchenne muscular dystrophy
By specialty
Pediatrics
By research site
The Duchenne Registry / PPMD· Washington D.C., DC

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