Patients as Partners Profile Entry Form

Please tell us whether you are creating a new profile or updating a previous one:
I am creating a new Patients as Partners profile.I am updating my original Patients as Partners profile.

First Name: (required)

Middle Initial:

Last Name: (required)

Street Address: (required)

City: (required)

State:
-- select state --AlaskaAlabamaArkansasArizonaCaliforniaColoradoConnecticutDistrict of ColumbiaDelawareFloridaGeorgiaHawaiiIowaIdahoIllinoisIndianaKansasKentuckyLouisianaMassachusettsMarylandMaineMichiganMinnesotaMissouriMississippiMontanaNorth CarolinaNorth DakotaNebraskaNew HampshireNew JerseyNew MexicoNevadaNew YorkOhioOklahomaOregonPennsylvaniaRhode IslandSouth CarolinaSouth DakotaTennesseeTexasUtahVirginiaVermontWashingtonWisconsinWest VirginiaWyoming

ZIP:

Country (If other than U.S.):

Email: (required)

Phone:

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.

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.

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.

Have you or has someone in your family had a genetic test for CMT?
YesNo

Did the genetic test confirm the CMT type and subtype?
YesNo

Please select your CMT type: -- select CMT type --CMT Type 1CMT Type 2CMT Type 4CMT Type XHNPPI Don't Know

Please select your CMT subtype: (required) -- select CMT subtype --1A1B1C1D1E1F1X2A2A2B2B2C2D2E2F2G2I2J2K2L2M2N2O2P2Q2S2Z4A4B4B14B24B34C4D4E4F4G4H4JX1 (Same as 1X)X2X3X4X5X6Undiagnosed/Unknown

It is also extremely helpful to know year of birth, age at onset/appearance of symptoms, and age at diagnosis. Please let us know if the year of birth and ages below are for you, your child or your spouse:
For MeFor My ChildFor My Spouse

Birth Year:
--birth year--202020192018201720162015201420132012201120102009200820072006200520042003200220012000199919981997199619951994199319921991199019891988198719861985198419831982198119801979197819771976197519741973197219711970196919681967196619651964196319621961196019591958195719561955195419531952195119501949194819471946194519441943194219411940193919381937193619351934193319321931193019291928192719261925192419231922192119201919191819171916191519141913191219111910

Age at Onset:
--onset age--123456789101112131415161718192021222324252627282930313233343536373839404142434445464748495051525354555657585960616263646566676869707172737475767778798081828384858687888990919293949596979899

Age at Diagnosis
--diagnosis age--123456789101112131415161718192021222324252627282930313233343536373839404142434445464748495051525354555657585960616263646566676869707172737475767778798081828384858687888990919293949596979899

Have you or has someone in your family been evaluated and/or treated at a CMTA Center of Excellence?
YesNo

Have you or has someone in your family joined the INC Rare Diseases Clinical Research Network (RDCRN) Contact Registry?
YesNo

Have you or has someone in your family joined INC Study 6601: Natural History Evaluation of Charcot Marie Tooth Disease?
YesNo

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