CMT North American Database
Dear Patient,
A database for Charcot-Marie-Tooth (CMT) patients and families was 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 Muscular Dystrophy Association. 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.
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) 577-5273, Monday - Friday, 9:00 am - 5:00 pm EST or by email at kpfranci@med.wayne.edu
Your support of the CMT North American Database is greatly appreciated.
Sincerely,
Michael Shy, MD
The CMT North American Database
Associate Professor of Neurology and
Molecular Medicine and Genetics
Wayne State University School of Medicine
For more information about the database, click here.
To learn how to enroll, click here.