Colon Cancer Alliance for Research and Education for Lynch Syndrome
Educate the public and healthcare professionals about
Lynch Syndrome and to help fund research for a cure for
What is Lynch Syndrome?
Lynch Syndrome is a hereditary disorder that affects up
to 1.2 million people in the United States. It increases the
risk of colon, uterine, ovarian, and other cancers. These
cancers often occur at a young age.
Are you at risk?
If multiple family members have cancer and at least one
person is younger than the age of 50, please learn more
about Lynch Syndrome.
CCARE Events and News
Lynch Syndrome Awareness Day 3/22/2023
On Lynch Syndrome Awareness day we are delighted to announce our partnership with the Collaborative Group of the Americas Inherited Gastrointestinal Cancer (CGA-IGC)
CCARE Lynch Syndrome will sponsor the CCARE Lynch Syndrome & CGA-IGC Research Award, a two-year $36,000 award that invites applications on research, quality improvement, or patient engagement projects that improve the lives of patients and/or their family members with Lynch syndrome. Applications for the CCARE Lynch Syndrome & CGA-IGC Research Award grant open today, March 22, 2023.
Studies in the News
The New England Journal of Medicine just published an article on Effect of Colonoscopy Screening on Risks of Colorectal Cancer and Related Death. This was a large study in Europe with 84,585 participants. Some news outlets are suggesting this study showed that a colonoscopy is not effective in preventing colon cancer. However, if you look at the data carefully the opposite is true. The study looked at people 55-64 years old who were “invited” to have a colonoscopy and compared them to “usual care”. Unfortunately, only 42% of those people who were recommended to have a colonoscopy actually had one. Despite the low follow-up for colonoscopies the study group did have an 18% decreased risk of developing colorectal cancer. But they only had a 10% reduction of dying from colorectal cancer. While a 10% may seem significant, it was not “statistically” significant. However, if you look at the 42% of the people who actually followed through with the colonoscopy recommendation there was a 31% reduction in colorectal cancer and a 50% risk of death from colorectal cancer! That reduction is statistically significant. Thus, the true message from the study is for people in the 55-64 year old age group, listening to your physician about colonoscopies can save your life!
Lynch Syndrome Family Communication Study
If you are over 18 years old and were recently diagnosed with Lynch syndrome, please consider helping out on improving Family Communication with a research project from the University of Utah Graduate Program in Genetic Counseling and the Huntsman Cancer Institute. It is online, will take 20-30 minutes, and eligible participants may receive a $15 Amazon gift card. If interested, Email Dr. Lingzi Zhong at Lingzi.email@example.com.
This research survey will allow people with Lynch syndrome to discuss their experiences with uterine and ovarian cancer prevention which may help medical practitioners learn more about decision-making strategies used by the Lynch community to preserve their gynecological health.
Happy for everybody we met at our 2022 conferences!
- AAPA - Physician Assistant National Conference, May 21-23, Indianapolis, Indiana
- AANP - Nurse Practitioner National Conference June 21-26, Orlando, Florida
- AAFP FMX - Family Practitioner National Conference, September 20-24, Washington DC
- FORCEs Against Hereditary Cancer Conference October 12-13, Virtual.