RecruitingNCT02069756

The Duchenne Registry

The Duchenne Registry: An International, Patient-Report Registry for Individuals With Duchenne and Becker Muscular Dystrophy (Member of TREAT-NMD Neuromuscular Network)


Sponsor

The Duchenne Registry

Enrollment

10,000 participants

Start Date

Oct 1, 2007

Study Type

OBSERVATIONAL

Conditions

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.


Eligibility

Inclusion Criteria1

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

Exclusion Criteria1

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

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Locations(1)

The Duchenne Registry / PPMD

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

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NCT02069756


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