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Participants Needed for CMT Research Study

The Inherited Neuropathies Consortium (INC) of the Rare Diseases Clinical Research Network (RDCRN) is conducting a research study looking at what symptoms and day-to-day issues are specifically important to adults with Charcot Marie Tooth (CMT) neuropathy. This study will help doctors and researchers develop a scale that will be able to measure CMT more accurately than the general ones currently available.

A CMT-specific scale would be more relevant and potentially improve the ability to detect the effects of treatments in research for CMT. This study is called INC 6606: An Analysis of the Symptomatic Domains Most Relevant to Charcot Marie Tooth Neuropathy (CMT) Patients (USF IRB#Pro00006746). This study is being conducted by investigators at the University of South Florida and the University of Rochester.

The study involves an online survey written by Dr. David Hermann and his colleagues at the University of Rochester, in upstate New York. They initially talked with their patients and asked them in what ways CMT affects their daily lives and what issues are important to them. After studying these conversations, they decided the next step would be to collect information from a larger group of people and so wrote an online survey to send to members of the RDCRN Contact Registry for the Inherited Neuropathies Consortium.

The study was launched last summer to members of the Contact Registry, who received an e-mail inviting them to take part. Dr. Herrmann and his colleagues were pleased to receive 243 replies. The researchers want to give more people the opportunity to be included and so are planning to send out the survey again at some point during spring 2013, but this time they are not including the muscle cramp survey.

They are asking members of the Contact Registry who last summer did not complete the larger multistep survey, to consider completing this one-step CMT Research Survey. Members of the Contact Registry who have turned 18 years old since the beginning of this study and new members of the Contact Registry who have joined since July 17, 2012 will be receiving this survey for the first time. The CMT research survey is completed online, and should take about 40 minutes. Since it is possible to save your work and return to it, the survey doesn’t have to be done in one sitting.

This study is for adults (18 years and older) with CMT who can read and speak English and have joined the RDCRN INC Contact Registry. If you receive an email invitation to join this study, we encourage you to take part and complete the survey.

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If you are not yet a member of the RDCRN INC Contact Registry, you can join at
http://rdcrn.org/INC/register to be a part of future studies.

More information on the study can be found at
http://rarediseasesnetwork.epi.usf.edu/INC/studies/CMT-6606.htm.

More information on the RDCRN INC Contact Registry can be found at
http://rdcrn.org/INC/register.

If you have more questions about this study, please feel free to contact the study
Principal Investigator, Dr. David Herrmann, at:

University of Rochester Medical Center
Department of Neurology, Neuromuscular Division
601 Elmwood Avenue, Box 673
Rochester, NY 14642-8673
Tel: (585) 275-1267
Email: care of janet_sowden@urmc.rochester.edu

For questions related to the collection of the study data at the University of South
Florida, please contact Denise Shereff, MLIS, AHIP at:

University of South Florida
Data Management and Coordinating Center
3650 Spectrum Blvd., Suite 100
Tampa, FL 33612
Tel: (813) 396-9557
Email: shereffd@epi.usf.edu

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