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Inherited Colorectal Cancer and Familial Polyposis Registry


Listen to a podcast about the registry and inherited colorecal cancer syndromes.

The Inherited Colorectal Cancer and Familial Polyposis Registry at Washington University School of Medicine and the Siteman Cancer Center offers clinical resources to families with inherited colorectal cancer syndromes with a goal of reducing the incidence of colorectal cancer.

Up to 5 percent to 6 percent of all colon cancers in the United States are caused by inherited colon cancer syndromes. Most patients in the registry have familial adenomatous polyposis (FAP), an inherited condition in which polyps inevitably progress to cancer if not removed. Others have hereditary non-polyposis colon cancer (HNPCC), which results in cancers of the colon (primarily), uterus, ovaries, urinary tract and stomach. Other inherited conditions include MYH-associated polyposis (MAP) and Peutz-Jeghers syndrome (PJS).

By enrolling in the registry, patients gain access to educational events, relevant literature and timely reminders for follow-up appointments to ensure they are receiving the best preventive care possible. Membership in the registry is free, and patients with inherited colorectal cancer syndromes are highly encouraged to become involved.

The registry offers:

  • Educational events and literature on inherited colorectal cancer syndromes
  • A multidisciplinary care team, including colorectal surgeons, gastroenterologists, genetic counselors and a registry coordinator
  • Opportunities to become involved in research related to inherited colorectal cancer syndromes
  • The latest updates on genetic testing, screening guidelines, research findings, current studies and other pertinent news

For more information, visit the Inherited Colorectal Cancer and Familial Polyposis Registry website.