Expanded CMT Prevalence Study in Southwestern Pennsylvania

Six Counties Added to Original Study Area

The CMT Prevalence Study begun in Cambria and Somerset counties in 2006 has been expanded to include Allegheny, Bedford, Blair, Clearfield, Indiana, and Westmoreland counties.

A Vital Need for Reliable Information About CMT

How many Americans have CMT is not known. A study conducted in Norway in 1974 suggests that as many as one in 2,500 people may have the disease. However, the lack of accurate and current statistics limits the funding of research and clinical trials into the causes, treatments, and possible cures relating to CMT.

This vital need for reliable information has led the Charcot-Marie-Tooth Association (CMTA) to team with the John P. Murtha Neuroscience and Pain Institute of the Conemaugh Health System in Johnstown to conduct the nation’s first comprehensive CMT Prevalence Study. The census is made possible by a grant from the Pennsylvania Legislature.

Should You Participate?

How Do You Participate?

Participation in the study is entirely voluntary. Your identity and all personal information submitted is strictly confidential. Should you choose to participate, it should take only about 20 minutes to complete the survey. Detailed instructions are provided prior to the start of the survey. There are 3 ways to access the survey questionnaire:

1. Online: You can click here to visit the Conemaugh Health System website and complete the questionnaire.
2. Request a printed survey: You may call Conemaugh Health System at 1-888-405-0139 to request a printed copy of the questionnaire.
3. Find the survey at doctor’s offices: The survey is available at more than 500 doctors' offices in the 8-county survey area.

Our Thanks to You!

We encourage everyone who is eligible to take part in this important study, and to show our appreciation, everyone who completes the survey will have the option of receiving a free one-year membership (a $40 value) to the CMTA.

For Further Information...

We emphasize that this is purely a research study to more accurately determine the number of people with CMT. If you have any questions about the census, please call toll-free 1-888-405-0139 or email cmt@conemaugh.org.