North American CMT Database info

[Guest guest]

Rob,

You might check into this. From re-reading through the enrollment

procedures, it is patient-driven, lots of paperwork, but your doctor

also has a section. There are confidentiality clauses as well. This site

has all the specific enrollment info. What's below is off the opening

page. http://www.charcot-marie-tooth.org/site/content/database/enrollment.asp

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

The CMT North American Database

A database for Charcot-Marie-Tooth (CMT) patients and families has been

established in 2001 by investigators at Wayne State University and

Indiana University. The information collected will be available to

investigators across North America and will hopefully greatly expand our

knowledge of CMT. The database is currently supported by generous

contributions from the CMTA and the Buuck Family Foundation. Please take

the time to read over this information and consider participating in the

database.

We are interested in having individuals and their family members with

all types of CMT participate in the database. Participation involves

filling out a series of forms about your family and medical history,

consenting to have medical records relating to your CMT reviewed, and an

examination form filled out by your physician. You will be contacted on

a yearly basis to update your information. You may also be contacted in

the future and invited to participate in other research projects.

However, you are under no obligation to participate in these projects.

Participation in this project is totally voluntary. You can discontinue

your participation at any time. Information concerning you and your

family will be held in the strictest confidence. Information that cannot

be traced back to you will be available to researchers. However,

identifying information will be released only with your separate written

consent.

More information about the database How to enroll (go to link above)

If after reading over this information, you have questions or you would

like more information about the database, please contact the

Charcot-Marie-Tooth Disease Research Team at Wayne State University at

(313) 577-1689, Monday - Friday, 9:00 am - 5:00 pm.

Your support of the CMT North American Database is greatly appreciated.

Sincerely,

Shy, MD

The CMT North American Database

Associate Professor of Neurology and

Molecular Medicine and Genetics

Wayne State University School of Medicine

and

Krajewski, MS

The CMT North American Database

Assistant Professor of Neurology and

Molecular Medicine and Genetics

Wayne State University School of Medicine