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The Hereditary Colon and Rectal Cancer (HCRC) Registry at Lahey Hospital & Medical Center was established in 1998. The purpose of the registry is to help educate patients and their families on the risks of hereditary colon and rectal cancer and various polyposis syndromes such as Familial Adenomatous Polyposis (FAP) and Hereditary Non-Polyposis Colon Cancer (HNPCC) or Lynch Syndrome, and to conduct clinically important research on inherited colon and rectal cancer. A network of multidisciplinary and specialty services, including risk assessment, genetic counseling, physician consultations and genetic testing for appropriate individuals, is available to patients and the families of patients who are affected by these genetic diseases. Patients are referred through our medical practice of approximately 450 physicians, various community group practices or patient self-referral.

The HCRC Registry at Lahey Hospital & Medical Center maintains an extensive Institutional Review Board (IRB) approved database of families, which is frequently updated and provides participating individuals with ongoing education, updates on screening recommendations and colorectal cancer prevention.

Enrolling in the HCRC Registry involves completing a comprehensive family history form, providing personal health information and signing a patient informed consent to participate. Individuals will be contacted each year to update information, and all information that is collected will remain confidential.

The HCRC Registry is a member of the The International Society for Gastrointestinal Hereditary Tumors (INSIGHT) and the Collaborative Group of the Americas on Inherited Colorectal Cancer.

The registry is also closely associated with the Familial Cancer Risk Assessment Center at Lahey.

For individuals in the United States, the lifetime risk of developing colorectal cancer is approximately 6 percent, or one in every 17 people. Most of the time, colorectal cancer occurs in people over 50 years of age. If you have a first degree relative (for example, a parent, sibling or child) who had colorectal cancer at an early age, your risk of developing colon cancer is increased. If you also have more than one close relative (for example, mother, father, sibling, child, grandparent, aunt or uncle) who has had colon cancer before age 50, you are at even greater risk. For such patients, an assessment by a genetic counselor is helpful in determining the most personalized and appropriate guidelines for screening and preventive care based on both individual family history and standard practice recommendations.

With people who have either a personal or a family history of Familial Adenomatous Polyposis (FAP) or Hereditary Non-Polyposis Colorectal Cancer (HNPCC) or Lynch Syndrome, the risk of developing colorectal cancer is very high. Since we know some of the genes responsible for these conditions, genetic testing may be of assistance to help identify individuals who are at increased risk.

Refer to the Registry Enrollment Criteria page for more information about increased risk.