Today the Inherited Neuropathy Consortium (INC) named the CMT Research Foundation as a partner in their Patient Advocacy Groups. This gives the CMT Research Foundation access to INC resources, researchers and its clinical infrastructure through 21 CMT Centers of Excellence, putting CMT Research Foundation on equal footing with larger non-profits who also fund CMT research. The INC is led by Michael E. Shy at the University of Iowa, a longtime friend, associate and doctor of both Pat and mine.
Supported in part by the federal National Institutes of Health, the INC is an integrated group of academic medical centers, patient support organizations, and clinical research resources dedicated to conducting clinical research in different forms of CMT and improving the care of patients.
Before the INC was established, there wasn’t a coordinated international effort to share clinical data on CMT patients. Moreover, the INC has performed natural history studies, generated and tested outcome instruments for adults, children and infants with CMT, and begun testing potential biomarkers. It has developed patient reported outcome instruments and has enrolled more than 7,000 participants into its protocols. The INC developed the CMT-International Database that consists of national registries from around the world that use the same CMT Minimal Dataset which is used by the INC. Finally, they have trained a number of young investigators who are committed to a career investigating CMT.
To learn more about the INC and its impact on developing therapies for CMT, please visit https://www.rarediseasesnetwork.org/cms/inc/.