What is a Registry?

The Inherited Colorectal Cancer Registry at Washington University School of Medicine was started in the 1970s by Ira Kodner, MD, as a resource for families with inherited colorectal cancer syndromes. The main purpose of the registry is to provide education and support to you and your family members with inherited colorectal cancer syndromes through prevention, early diagnosis and treatment of colorectal cancer.

Up to 5 to 6 percent of all colon cancers in the United States are caused by inherited colorectal cancer syndromes. The two most common syndromes are familial adenomatous polyposis (FAP), an inherited condition in which colon polyps inevitably progress to cancer if not removed, and hereditary non-polyposis colon cancer (HNPCC), which results in cancers of the colon and other organs. Other inherited conditions may include MYH-associated polyposis (MAP) and Peutz-Jeghers syndrome (PJS).