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Lynch Syndrome Survivorship Study

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By Allison M. Burton, Ph.D., postdoctoral fellow, Department of Behavioral Science, MD Anderson Cancer Center

An estimated 2% to 4% of colorectal cancer cases are due to Lynch syndrome (also known as hereditary non-polyposis colorectal cancer or HNPCC), a genetic cancer syndrome that results in a predisposition to early (adult) onset cancers. A diagnosis of Lynch syndrome has implications for both patients and their families because first-degree relatives have a 50% risk of inheriting the gene.

The cancers most commonly associated with Lynch syndrome are colorectal cancer for men and endometrial and colorectal cancer for women. But lifetime risks for other cancers, including ovarian, stomach, small bowel, hepatobiliary tract, pancreated, urinary tract, brain and skin cancers, are also increased.

As a result, individuals with Lynch syndrome are advised to follow high-risk management guidelines, including annual colonoscopy (initiated at age 20-25 years) and screening for endometrial cancer and other cancers associated with the syndrome.

Much of the research to date on Lynch syndrome has focused on the medical aspects, such as screening, but less is known about how people live their day-to-day lives. 

At MD Anderson, we are interested in finding out how colorectal cancer survivors live with having Lynch syndrome. We are currently recruiting for a new mailed survey study for people with Lynch syndrome who have had colorectal cancer. 

Individuals who are over the age of 18 and English-speaking are eligible. The survey takes approximately 45 minutes and participants will receive a $10 gift card for their time. 

If you are interested in participating or want more information, please contact Allison Burton, Ph.D., at 713-792-6280 or at aburton@mdanderson.org

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