Goals, Mission & Vision h1 >
- Enroll a large group of patients with inherited neuropathies into natural history studies (where subjects are followed over time and clinical, laboratory and neurophysiological data, as well as blood samples specifically for research, are collected at regular intervals).
- Conduct clinical trials of promising new drugs for the treatment of inherited neuropathies.
- Establish a patient contact registry.
- Discover new laboratory markers of disease that will lead to better treatment and deeper scientific understanding of the causes of these diseases.
- Develop improved methods for studying inherited neuropathies.
- Work with inherited neuropathy patient support groups to help those patients who wish to be involved in research connect with those doctors conducting the research.
- Help other scientists do more research on inherited neuropathies by providing specimens and clinical data from the INC RDCRC for analysis.
- Train new young investigators in the field of inherited neuropathies.
- Construct and maintain an electronic website resource with significant information for clinicians, researchers, and patients.
The mission of the Inherited Neuropathy Consortium - Rare Disease Clinical Research Consortium (INC-RDCRC) is to conduct clinical research to learn more about CMT with the goal of developing new and better treatments to improve the care of patients with inherited neuropathies. We also seek to provide up-to-date information for patients to help them manage their diseases and to assist in connecting patients with support groups, expert doctors, and clinical research opportunities.