How to Enroll in the Database
There are two forms you will need to fill out. One is a questionnaire about symptoms, and the other is a questionnaire about family history. Only one person from each family needs to fill out the family history form. We would also like to get any medical records relevant to your diagnosis of CMT.
There is also an examination form to be filled out by your doctor. Sometimes people are not regularly followed by a doctor for their CMT or may not have a doctor who is comfortable filling out the examination sheet. We would like you to make every effort to have this form filled out by your doctor. If that is not possible, we would still like you to enroll, but it becomes especially important that we receive your medical records if the examination form is not filled out.
There are also a few consent forms that need your signature giving permission for your information to be entered into the database. After we receive these forms, we will contact you on a yearly basis to update your information.
Sometimes there may be researchers who would like more information about a certain group of patients. For example, someone studying CMT1B might want blood samples on all women with this type. In this instance, the researcher must submit a proposal to be reviewed by a group of CMT experts from across the country. If the project is approved, the database staff will contact the patients that qualify to explain the project. ONLY IF THE PATIENT SIGNS A SEPARATE WRITTEN CONSENT FORM FOR THAT PROJECT, WILL THEIR NAME BE GIVEN TO THE RESEARCHER.
There are two ways you may obtain the forms and more information about the database:
- Call Kevin Francies, who is the research assistant working on the database at WSU. He may be contacted by phone at 313-577-5273 or via email at kpfranci@med.wayne.edu. Kevin can answer any questions and can send out a packet of information including the necessary forms.
- Download the forms from the WSU CMT website. Unfortunately, because signatures are needed on the consent forms, the forms must be mailed and cannot be sent to us electronically.
We understand that the forms are lengthy and there are many questions to answer. However, we feel that the information gathered from the forms is extremely important and would ask that you take the time to fill them out completely. If there are questions to which you do not know the answer, that is fine. Most questions have a line to check if you "don't know." Please feel free to call us if you have ANY questions about filling out the forms.
We truly believe that this database will be an extremely important tool in speeding the progress of our understanding of CMT. However, it is only the participation of many people with CMT that will make it be successful. We really hope that you will consider participating in this exciting project. Please call us at 313-577-5273 if you have any questions.
Sincerely,
Michael Shy, MD
The CMT North American Database
Associate Professor of Neurology and
Molecular Medicine and Genetics
Wayne State University School of Medicine |
