The Duchenne Registry
The Duchenne Registry (formerly DuchenneConnect) begain in 2007, when a group of throught leaders in the Duchenne Muscular Dystrophy (DMD) community began discussing the need for a new kind of resource that would connect and serve the needs of the entire community. What they envisoned was a central hub that would bring together those living with Duchenne or Becker, along with their families and caregivers, to connect them with medical research, clinical care, clinical trials, and each other. At the same time, it would also be a resource for researchers and industries with an interest in Duchenne, allowing access to aggregate, de-identified data provided by patients and their families – information that could prove vital to advances in care and treatment. Today. the result of this endeavour is The Duchenne Registry, the largest, most comprehensive registry for Duchenne and Becker Muscular Dystrophy.
The Duchenne Registry for the USA is managed and supported by Parent Project Muscular Dystrophy United States. The website provides information on genetic testing, clinical trials, and access to related services. To register as a member of The Duchenne Registry or to contact a Duchenne Registry Coordinator, visit www.duchenneregistry.org
El registro de pacientes de DuchenneConnect de los Estados Unidos es administrado por el Departamento de Genética Humana de la Universidad de Emory y patrocinado por el Parent Project Muscular Dystrophy de los Estados Unidos. Este portal de la Internet dará información de exámenes genéticos, estudios clínicos, y acceso a servicios relacionados al mismo. Para registrarte como miembro de DuchenneConnect or para contactar a un coordinador de Duchenne Registry, visítanos en www.duchenneregistry.org .
The United Dystrophinopathy Project is managed by Dr Kevin Flanigan and is based at the Nationwide Children’s Hospital, Ohio. For further information please contact Dr Flanigan.
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Parent Project Muscular Dystrophy
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