About Your Information We Collect
One focus is to collect detailed information on you and your relatives to create a resource that colorectal cancer researchers can use to study hereditary aspects of the disease. As a registry participant, you may be invited to take part in related research projects. Participation is always voluntary, and all data collected and used would be completely confidential and not contain any identifying information.
Enrolling in our Registry does not affect your relationship with your personal physician. Our focus is strictly on data collection and education. Identity is never disclosed, nor is the information collected in the registry added to the patient’s personal medical record. All information is stored in a secure location.
How Does It Work?
The Registry works together with our Cancer Genetic Counseling Program. While the cancer genetic counseling program provides individuals with personal risk assessments and screening recommendations, the Registry uses that information to educate individuals about colorectal cancer. You have the choice to enroll in the Registry, obtain genetic counseling, or both.
Hereditary Colorectal Cancer
Hereditary colorectal cancer is a category of large bowel cancer (colon or rectum) caused by a genetic susceptibility to certain types of cancer. Individuals with hereditary colorectal cancer susceptibility have an alteration (known as a mutation) in their genes which causes an increased risk of developing cancer. These mutations can be passed down through generations and are present from birth. If a mutation is identified, then we can use this knowledge to encourage proper screening and prevention strategies.
There are currently several syndromes known to be associated with hereditary colorectal cancer. The following have differing characteristics and are caused by mutations in specific genes.
- Hereditary non-polyposis colorectal cancer (HNPCC)
- Familial adenomatous polyposis (FAP)
- Attenuated familial adenomatous polyposis (AFAP)
- MYH associated polyposis (MAP)
- Juvenile polyposis syndrome (JPS)
Eligibility To Join
You’re eligible to join the registry if you’ve personally been diagnosed with:
- Colorectal cancer prior to age 50
- Colorectal cancer prior to age 60, with specific pathology (MSI-H tumor, Signet ring type differentiation, Crohn's-like lymphocytic reaction, Medullary growth pattern)
- Colorectal cancer at any age, plus another type of cancer (including colorectal, endometrial, ovarian, duodenal, stomach, urethral/renal pelvis, hepatobiliary tract, brain/central nervous system)
- Colon adenomas before age 45
- Endometrial (uterine) cancer prior to age 50
- Multiple colon polyps (more than 10)
- A hereditary colorectal cancer syndrome (e.g., HNPCC, AFAP, FAP, MAP, JPS)
You’re also eligible if you have:
- A first-degree relative (siblings, parents, children) meeting the above criteria
- Two or more relatives with colorectal cancer and/or endometrial cancer
- Close relatives with multiple colon polyps
- A relative with a known hereditary colon cancer syndrome