Rare Diseases Clinical Research Network |
ISSUE
NIH RESPONSE
THE RARE DISEASES CLINICAL RESEARCH NETWORK II (RDCRN)
THE CONSORTIA The 19 consortia and DMCC included in the current RDCRN, as well as Principal Investigators, primary institutions and URLs for the consortia are listed below: Urea Cycle Disorders Consortium Batshaw, Mark L., M.D. Children’s Research Institute, Washington DC http://rarediseasesnetwork.epi.usf.edu/ucdc/ Vasculitis Clinical Research Consortium Merkel, Peter M.D., M.P.H. Boston University School of Medicine, Boston, MA http://rarediseasesnetwork.epi.usf.edu/vcrc/ Dystonia Coalition Jinnah, H. A., M.D. Emory University, Atlanta, GA http://rarediseasesnetwork.epi.usf.edu/Dystonia/ Brain Vascular Malformation Young, William L., M.D. University of California San Francisco, CA http://rarediseasesnetwork.epi.usf.edu/BVMC/index.htm Genetic Disorders of Mucociliary Clearance Knowles, Michael, M.D. University of North Carolina at Chapel Hill, NC http://rarediseasesnetwork.epi.usf.edu/gdmcc/ Chronic Graft Versus Host Disease Consortium (cGVHD) Lee, Stephanie J., M.D., M.P.H. Fred Hutchinson Cancer Research Center, Seattle, WA http://rarediseasesnetwork.epi.usf.edu/cGVHD/index.htm (NEPTUNE) Nephrotic Syndrome Study Network Kretzler, Matthias, M.D. University of Michigan, Ann Arbor, MI http://rarediseasesnetwork.epi.usf.edu/NEPTUNE/ Primary Immune Deficiency Treatment Cowan, Morton J., M.D. University of California San Francisco, CA http://rarediseasesnetwork.epi.usf.edu/PIDTC/index.htm Lysosomal Disease Network Whitley, Chester B., M.D University of Minnesota Twin Cities, MN http://rarediseasesnetwork.epi.usf.edu/LDN/index.htm Autonomic Rare Diseases Clinical Research Consortium Robertson, David, M.D. Vanderbilt University Medical Center, TN http://rarediseasesnetwork.epi.usf.edu/ARDCRC/ Inherited Neuropathies Consortium Shy, Michael E., M.D. Wayne State University, MI http://rarediseasesnetwork.epi.usf.edu/INC/ Rare Kidney Stone Consortium Milliner, Dawn S., M.D. Mayo Clinic College of Medicine, Rochester, MN http://rarediseasesnetwork.epi.usf.edu/RKSC/index.htm The Porphyria Rare Disease Clinical Research Consortium Desnick, Robert J., Ph.D., M.D. Mount Sinai School of Medicine, New York, NY http://rarediseasesnetwork.epi.usf.edu/porphyrias/index.htm Angelman, Rett, and Prader-Willi Syndromes Consortium Percy, Alan, M.D. University of Alabama at Birmingham, AL http://rarediseasesnetwork.epi.usf.edu/arpwsc/ Salivary Gland Carcinomas Consortium El-Naggar, Adel K., M.D., Ph.D. University of Texas MD Anderson Cancer Center, Houston, TX http://rarediseasesnetwork.epi.usf.edu/SGCC/index.htm STAIR: Sterol And Isoprenoid Diseases Consortium Steiner, Robert, M.D. Oregon Health & Sciences University, Portland, OR CINCH: Consortium for Clinical Investigation of Neurological Channelopathies Griggs, Robert C., M.D. University of Rochester, NY http://rarediseasesnetwork.epi.usf.edu/cinch/ North American Mitochondrial Diseases Consortium DiMauro, Salvatore, M.D. Columbia University, New York, NY http://rarediseasesnetwork.epi.usf.edu/NAMDC/ Clinical Research Consortium for Spinocerebellar Ataxias Ashizawa, Tetsuo, M.D. University of Florida, Gainesville, FL http://rarediseasesnetwork.epi.usf.edu/CRC-SCA/ Data Management and Coordinating Center (DMCC) for the RDCRN Krischer, Jeffrey, Ph.D. University of South Florida, Tampa, FL |
sábado, 9 de marzo de 2013
NIH Fact Sheets - Rare Diseases Clinical Research Network
NIH Fact Sheets - Rare Diseases Clinical Research Network
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