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The North American Mitochondrial Disease Consortium
Description
The North American Mitochondrial Disease Consortium (NAMDC) was established to create a network of all clinicians and clinical investigators in North America (US and Canada, with the hope of including Mexico in the future) who follow sizeable numbers of patients with mitochondrial diseases and are involved or interested in mitochondrial research. The NAMDC has created a clinical registry for patients, in the hopes of standardizing diagnostic criteria, collecting important standardized information on patients, and facilitating the participation of patients in research on mitochondrial diseases.
For the study of any rare disease, the collection of specimens is a major challenge. The NAMDC is establishing a repository for specimens and DNA from patients with mitochondrial diseases, in order to make materials easily available to consortium researchers.
Finally, the NAMDC will conduct clinical trials and other kinds of research. The consortium makes biostatisticians, data management experts, and specialists in clinical research available to participating physicians, so that experiments conducted through the NAMDC can make the most efficient and innovative use of the generous participation of patients.
Abbreviation: NAMDC
Reference: NAMDC
MitoPedia topics:
MitoGlobal Organizations
Member
NAMDC agreed to be listed as MitoGlobal Organization at UMDF meeting in Newport Beach,CA, US in June 2013
Contact
NAMDC Central Coordinator
Johnston Grier
Statistical Analysis Center
Dept. of Biostatistics, Columbia University
722 West 168th St., R614
New York, NY 10032
Email: [email protected]