The goal of our Patients as Partners in Research initiative is to involve you and other members of the patient community in furthering the development of treatments as well as advancing our knowledge of the impact of CMT on daily life and how we can help meet the needs of everyone with CMT.

Quite simply, the more we know about your type of CMT and how it affects your family, the better we can help advance research into all aspects of CMT, and, at the same time, provide you with important information specifically about your type of CMT.

We hope you’ll take a few moments to complete the form below and build your CMT profile. We’ll keep it completely confidential and use it to send you information about research into your type of CMT as well as other opportunities for participation.

    Patients as Partners Profile Entry Form

    I am creating a new Patients as Partners profile.I am updating my original Patients as Partners profile.

    Please tell us about your CMT type and your CMT experience.

    CMT is described as an inherited peripheral neuropathy. In the majority of cases, this inheritance follows an autosomal dominant pattern, which means, for example, that if you have CMT1A, most likely one or the other of your parents has CMT1A. If they do not, it could be that they are undiagnosed or that there is no family history and you have CMT as the result of a spontaneous mutation.

    There are also X-linked and recessively inherited types of CMT, so how CMT affects you and your family—in conjunction with what type you have—can help determine your family's genetic profile. Please answer the next series of questions as completely as possible.

    I have CMT.
    My spouse has CMT.
    I have a child/children with CMT.
    I am the child of a parent with CMT.
    We have no family history of CMT; I, or my spouse or child is the first to have it.

    As we look forward to recruiting participants for clinical trials, knowing whether or not your CMT diagnosis has been confirmed by a genetic test is extremely important, so we will first ask if you or anyone in your family has been tested. If the results were positive for a specific type and subtype, and if the physician ordering the test has shared that information with you or a family member, please select your type and subtype.

    If you or a family member have been diagnosed with CMT as the result of a physical exam, EMG/NCS and/or nerve biopsy, you may have been told what type you have, which you may select below. You should, however, leave subtype unselected as that can only be conclusively identified by genetic testing.



    For MeFor My ChildFor My Spouse




    Please let us know how we can keep you up to date with the latest news on research about your CMT type, as well as other news and information from the CMTA.

    Yes. Please send me CMTA eNews with information about research on my type of CMT and opportunities to participate.

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