Topic: A New Place for Information on CMT – Join the Contact Registry!
CMT is being researched as part of the National Institutes of Health sponsored Rare Disease Clinical Research Network (RDCRN), in a group called the Inherited Neuropathies Consortium.
Researchers from Wayne State University, the National Hospital for Neurology and Neuroscience, Queens Square, London, UK, University of Pennsylvania, Children’s Hospital of Philadelphia, University of Rochester, NY, University of Sydney, Australia, and C. Besta Neurological Institute, Milan, Italy are teaming up to create what we hope will be the largest contact registry of patients with CMT in the world.
Working with the CMTA, CMTUK and the Muscular Dystrophy Association (our three patient advocacy groups) we hope to obtain information from people with CMT about what factors they believe are important treatment targets for future therapies.
Please consider helping us develop more effective treatments for CMT. You can sign up to become part of the Contact Registry at the RDCRN website: http://rarediseasesnetwork.epi.usf.edu/INC/ That way, you would be among the first to know about any new information from this research or if clinical trials become available for your type of CMT.
Posted on behalf of Mike Shy, at Wayne State University!!
EDIT BY SAM LEWIS TO CORRECT INVALID LINK:
This link takes you to the RDCRN Home Page: http://rarediseasesnetwork.epi.usf.edu/
This link takes you to the Inherited Neuropathy Consortium section of the site: http://rarediseasesnetwork.epi.usf.edu/INC/
This link lists Current Research studies: http://rarediseasesnetwork.epi.usf.edu/INC/studies/
Last edited by SAM - Admin (09-05-2012 20:12:23)
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