School of Medicine

Wayne State University School of Medicine

About The CMT North American Database

What is Charcot-Marie-Tooth disease (CMT)?
Charcot-Marie-Tooth disease (CMT), named for the three doctors who described the condition in the late 1800's, is one of the most common inherited neurologic conditions. About one in 2,500 people have CMT. CMT first affects the lower legs and feet leading to weakness, numbness, and sometimes changes in the shape of the foot. As the condition progresses, weakness and numbness can also occur in the hands and forearms. CMT does not affect a person's intelligence and is usually not associated with a shortened life span.

What is the CMT database and why is it important?
CMT affects many people, and yet there is no cure for this condition and no effective treatment. The CMT North American Database has been created to serve as a common resource for researchers across the country. Access to large amounts of patient information will greatly help researchers to learn more about CMT. Any person with CMT will be eligible for the database. Participation in the Database is totally voluntary. The decision not to participate will not affect your medical care in any way. You and your family members are free to decline or discontinue participation at any time. There is no cost to you for participating; however, there is no direct payment for taking part.

How is information in the Database used?
The Database is housed at Indiana University in the Department of Medical and Molecular Genetics. The CMT North American Database computerizes the names of families including the information about the history of CMT in the family (family trees) and other related data. This information identifies patients and families who are interested in participating in research projects. Many investigators are interested in CMT and want to work on the problem, but need access to CMT families. It is important to have a system whereby scientists and CMT families can get in touch with each other.

Some researchers will only need statistical information that is in the database and would be given to them without information that could be traced back to you. Other researchers may have specific research studies and need information other than what is in the database. If you qualify for any of these additional research studies, the staff of the database from Indiana University will contact you. They will explain the particular research study to each person or family. If you are willing to participate and give written permission, your name and contact information will be given to the scientist. Your name and identifying information will NEVER be released without your written consent. Not everyone listed in the database will be asked to be a part of a separate research project.

What will I have to do?

Participation involves filling out a series of forms about your family and medical history, a consent to have your information be in the database, a consent to have medical records relating to your CMT reviewed, and an examination form filled out by your physician. After we receive your information, we will contact you if there are any questions. We may also contact you to request your permission to contact other family members. You may be contacted in the future if you qualify for any research studies. We will contact you on a yearly basis to update your information.

How do I get started?
Click here for specific instructions on how to enroll.

Research is helping us to learn more about CMT everyday. Our hope is that through the efforts of families with CMT, we will someday find a cure. The CMT North American Database is essential to this goal.