A Natural History Study of Charcot-Marie-Tooth

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Updated on 19 February 2024

Summary

This is a longitudinal study of individuals with CMT looking at the natural history of the disease to see how it changes over time. Participants are invited back on a yearly basis to determine how the changes are occurring.

Description

The purpose of this research study is to develop a database to better understand Charcot-Marie-Tooth disease (CMT). We will carefully measure changes in strength, sensation, and nerve conduction velocities, using non-invasive but state of the art technology, at intervals of approximately six months to one year for as long as you would like to continue being seen at our practice. Individuals may also be eligible to enroll in our substudy, the Genetics of CMT. Genetic testing on a research basis is more thorough than commercial testing. People who are eligible include all people with CMT1A and families who have an unidentified form of CMT.

FAQ

For more information, please reference the following links: https://www.rarediseasesnetwork.org/INC/studies/CMT-6601.htm and https://www.rarediseasesnetwork.org/INC/studies/CMT-6602.htm

Details
Condition Charcot-Marie-Tooth disease
Age 18years - 100years
Clinical Study IdentifierTX1042
Last Modified on19 February 2024

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Additional screening procedures may be conducted by the study team before you can be confirmed eligible to participate.

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If you are confirmed eligible after full screening, you will be required to understand and sign the informed consent if you decide to enroll in the study. Once enrolled you may be asked to make scheduled visits over a period of time.

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Complete your scheduled study participation activities and then you are done. You may receive summary of study results if provided by the sponsor.

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