Collecting Information From Patients and Family Members With Hereditary Colorectal Cancer Syndromes or Who Are at High Risk of Developing Colorectal Cancer

OBJECTIVES:

Primary

- To identify patients and their family members who have either hereditary colorectal
cancer or polyposis syndrome or are at high risk for developing hereditary colorectal
cancer.

Secondary

- To establish a tissue and data repository that will be used to further research in
hereditary colorectal cancer syndromes.

OUTLINE: Data is collected on patients and their families for inclusion in a hereditary
colorectal cancer registry. Registry data is entered into a secure database that includes
information on patient demographics and medical and family cancer history. The information
collected will be used to formulate screening and surveillance recommendations, to further
knowledge of hereditary colorectal cancer, and to facilitate cancer research. Registry data
will also be used to improve the quality of current standard of care through timely tracking
and notification of patients for follow-up care, identification of registry participants at
high risk for developing an inherited form of colon cancer, and by serving as a resource for
future research.

Registry patients may undergo optional blood, urine, and/or sputum sample collection for
inclusion in the tissue repository. Tissue samples from a previous biopsy may also be
obtained. Samples will be stored for future research studies.

DISEASE CHARACTERISTICS:

- Meets any of the following criteria:

- Patients and family members with a known hereditary colorectal cancer or
polyposis syndrome

- Patients who meet Amsterdam I, II, or Bethesda criteria

- Patients with a family history suggestive of a hereditary colorectal or polyposis
syndrome

- Patients diagnosed with colorectal cancer at < 50 years old

- Patients are identified through surgical, oncological, gynecological, and
gastrointestinal programs, as well as outside referrals, self referral, and the
Vanderbilit Tumor Registry

PATIENT CHARACTERISTICS:

- See Disease Characteristics

PRIOR CONCURRENT THERAPY:

- Not specified