Build Your Patients as Partners Profile

Patients as Partners in ResearchThe 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

First Name: (required)

 

Middle Initial:

 

Last Name: (required)

Street Address: (required)

 

City: (required)

State:

 

ZIP:

 

Country (If other than U.S.):

Email: (required)

 

Phone:

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

How does CMT affect you and/or your family? (Select all that apply.)
 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.

Have you or has someone in your family had a genetic test for CMT?
 Yes No

Did the genetic test confirm the CMT type and subtype?
 Yes No

Please select your CMT type:

Please select your CMT subtype: (required)

Have you or has someone in your family been evaluated and/or treated at a CMTA Center of Excellence?
 Yes No

Have you or has someone in your family joined the INC Rare Diseases Clinical Research Network (RDCRN) Contact Registry?
 Yes No

Have you or has someone in your family joined INC Study 6601: Natural History Evaluation of Charcot Marie Tooth Disease?
 Yes No

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.

If I'm not already signed up to receive CMTA eNews, please sign me up to receive eNews about: (Select all desired categories.)
 Events and Webinars
 News and Resources
 Research Updates