Help us answer questions that your doctors and the CMT Research Community aren’t too sure about.

by | May 19, 2014 | 0 comments

global-registry[1]300Did you know that you can become part of a community in therapy development and further research for all forms of CMT and inherited neuropathies? The mission of the Global Registry for Inherited neuropathies (GRIN) is to collect clinical and genetic information from patients with ALL forms of Charcot-Marie-Tooth (CMT) and other related rare and ultra rare inherited neuropathies.

We are actively seeking patients with a wide variety of symptoms: numbness or tingling, foot drop, hand deformities, muscle atrophy and weakness, as well as more unusual symptoms of hearing loss, breathing problems, and impaired vision. By contributing your information to GRIN, we can identify trends or find areas of these diseases that may not be recognized. A primary goal is to analyze the data to find patterns and the effects of living with a progressive neuromuscular disease. This will give us more insight of how your particular mutation affects you and others. More data will help us quantify your answers to some of the most important questions in the drug discovery process. The experts and stakeholders require this information to make breakthroughs in therapeutics and drug discoveries.

Please enroll today…it will only take 30 minutes or less to complete your profile. By contributing your information to GRIN, you will:

• Progress research to advance understanding of and treatments for inherited neuropathies

• Make a difference in the lives of others with inherited neuropathies

• Be informed of the latest clinical studies and trials for inherited neuropathies

Your profile will remain anonymous, so any information that you submit will not be tied to you directly, just added to the registry of information for analysis. Make a difference in the future treatments and understanding of inherited neuropathies…please join GRIN today!

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