North American Database questionnaire

[Guest guest]

I'm getting a package from Wayne University also to do a test study. A

woman, Carly Siskind, called and left a message on my machine and said she

would send me the pkg., or whatever it is, a questionnaire...How do these tests

work?? I'm game. It came from the CMT North American Database, research asst.

Does anyone have any input about this?

***** , The North American Database is intensifying efforts to get

people with CMT to register their type (and even if they don't know their type)

Did you ask for this information or was it sent unsolicited? Requesting

enrollment info is one thing, but unsolicitated info should be scrutinized. Link

to the Database info is

http://www.med.wayne.edu/neurology/ClinicalPrograms/CMT/Database/CMTDatabase.htm

~ Gretchen

[Guest guest]

Yes, I did ask for it. I was on a CMT site, and asked about it. Thanks,

I'll be careful not to jump into something not legit.

[Guest guest]

,

This is what I know. When someone calls Wayne State at the CMT Clinic ran by

Dr. Shy, they will return the call and send a packet out. There are papers

to be filled out. Basically this is a information bank. They research CMT and

if you ever get a chance to go there, you will be surprised on what you will

learn. They will put you through testing and educate you. And you will join

others as a statistic. All information is kept very private. They will ask

lots of questions and try to trace your family history of CMT.

Elaine