DuchenneConnect

From WikiGenetics

Contents 1 Background 2 Website 3 Recommended Sites 4 Links to Other Organizations

[edit] Background

DuchenneConnect is a patient registry, created to serve as a central hub linking the resources and needs of the Duchenne/Becker MD community: those living with the disease; family, friends, and caregivers; and the medical research community.

Established in 2007, DuchenneConnect is sponsored by the Parent Project Muscular Dystrophy with the cooperation of the Center for Disease Control (CDC), the National Institutes of Health Office of Rare Diseases Collaboration, Education, and Test Translation (CETT) program, and Emory University.

The mission of DuchenneConnect is to provide resources to help individuals with Duchenne and Becker muscular dystrophy and their families understand the steps that may be required to confirm the diagnosis, and the benefits and limitations of genetic testing. The program works with regional and local resources where possible.

DuchenneConnect allows participants to join the Registry to access services such as genetic counseling and genetic testing, and resources to assist in the understanding and development of new treatment trials in Duchenne/Becker muscular dystrophy. DuchenneConnect participants come predominantly from the United States, but registration is not restricted to the US population and participants from more than 50 countries are currently enrolled.

DuchenneConnect encourages professionals in the muscular dystrophy community, including care providers, policy makers, industry professionals, and the medical research community, to register, thereby gaining access data, tools, and assistance to aid them in research, treatment, and development of clinical trials/studies. Benefits also include access to current treatment/genetic testing data; assistance with searches for clinical trial/study development; and to obtain educational materials for patients and other community members.

DuchenneConnect collaborates with other international databases in order to contribute global knowledge of muscular dystrophy that may lead to new research studies/clinical trials and improved clinical treatment. Among these databases are: the TREAT-NMD (TREAT-Neuromuscular Diseases) international database and the NCBI (National Center for Biotechnology Information) at the National Library of Medicine, National Institutes of Health.

By connecting the world of the Duchenne patient with that of the Duchenne provider, we enable and enhance the flow of information and resources, to the benefit of both communities.

[edit] Website

• www.duchenneconnect.org

[edit] Recommended Sites

• Parent Project Muscular Dystrophy
• Treat Neuromuscular Network (TREAT-NMD)
• Collaboration, Education, and Test Translation

[edit] Links to Other Organizations

   * Advocacy Organizations
   * Academic Institutions
   * Biotech Companies
   * Government Agencies
   * Genetic Alliance
   * Laboratories
   * Law/Consulting Firm
   * Patient Registries
   * Policy Organizations/Think Tanks
   * Professional Societies
   * Other