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The Hereditary Colon and Rectal Cancer (HCRC) Registry at Lahey Clinic 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 Clinic 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.
