DMD patient registries in the USA
There are two patient registries in the USA for patients with DMD.
The United Dystrophinopathy Project is located at the University of Utah. Patients with DMD and BMD can register online at http://dystrophy.genetics.utah.edu/. For further information please contact Kevin Flanigan.
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The DuchenneConnect Patient Registry for the United States is managed by Emory University, Department of Human Genetics and supported by the 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 DuchenneConnect or to contact a DuchenneConnect Coordinator, visit us at www.duchenneconnect.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 clÃnicos, y acceso a servicios relacionados al mismo. Para registrarte como miembro de DuchenneConnect or para contactar a un coordinador de DuchenneConnect, visÃtanos en www.duchenneconnect.org.
