Participants Needed for SORD Clinical Trial
Plans are underway for a clinical trial to determine whether drugs already approved for other diseases are effective against a newly discovered form of recessive CMT2. The new form of CMT (sometimes diagnosed as distal hereditary motor neuropathy) is caused by the SORD gene and appears to be the most common recessive CMT type. Researchers have found the gene in many patients that have no family history of CMT.
The Inherited Neuropathy Consortium (INC), led by Dr. Stephan Züchner at the University of Miami, is preparing a systematic large study for SORD neuropathy. In order to identify as many patients as possible, free sequencing will be offered to anyone who has received a genetic diagnosis of CMT2 SORD or who meets certain criteria. Please check all that apply:
If you have been diagnosed with SORD or if you have been diagnosed CMT Type 2, your parents do not have CMT and you currently have no clear diagnosis by genetic test of my CMT gene and would like to be evaluated for possible participation in the SORD study, please complete and submit the form below.
By submitting this form, you explicitly give the Charcot-Marie-Tooth Association permission to share your information with Dr. Stephan Züchner, the University of Miami and the Inherited Neuropathy Consortium (INC) for the purpose of determining whether or not you meet the criteria for participation in a clinical trial related to evaluating the effectiveness of drugs in treating CMT neuropathy caused by the SORD gene. Your personal information will be used only for the purpose of contacting you and arranging for genetic sequencing and other tests which may be necessary. The results of these tests will be kept strictly confidential, and you will not be identified by name or other personal information to any other study participant. Should you wish to revoke this authorization, you may do so at any time by sending an email to info@cmtausa.org. However, even if you revoke this authorization, Dr. Stephan Züchner, the University of Miami and the Inherited Neuropathy Consortium (INC) may still use or disclose health information they already have obtained about you as necessary to maintain the integrity or reliability of the current research.