Colorectal Cancer Registry
Cancer registries are databases of cancer information that are used for research. They offer people the chance to participate in research that helps find new cancer treatments and cures. Registries also give researchers valuable data on how cancer works.
Oregon Colorectal Cancer Registry (OCCR)
The Oregon Colorectal Cancer Registry (OCCR) is a large collection of information on colorectal cancer from patients and families across the United States. This database continues growing as new patient information is included.
How does the OCCR work?
The registry staff collects information about families with a history of colorectal cancer. Information is gathered through medical records and a family history questionnaire. Collecting and reviewing a family’s health history helps staff create a family tree, called a pedigree.
Next, staff examines this information to determine if some families have more risk of developing colorectal cancer. These families are referred to the Colorectal Cancer Assessment and Risk Evaluation Clinic at the OHSU Knight Cancer Institute. Pedigrees are also reviewed for signs of inherited syndromes such as hereditary nonpolyposis colorectal cancer (HNPCC), juvenile polyposis syndrome (JPS), Peutz-Jeghers syndrome (PJS), familial adenomatous polyposis (FAP) and MYH associated polyposis (MAP).
In some cases, blood and tissue samples are collected and stored for research. These samples are an important contribution to discoveries that might help patients and families in the future.
The registry also helps patients manage their medical care. Each patient needs an individual care plan, which may include expertise of gastroenterology, surgery, oncology, medical genetics and supportive care services. A registry coordinator helps to streamline patient visits, ensuring each patient receives the necessary care from all specialties. If needed, high risk patients are identified and referred to the Colorectal Cancer Assessment and Risk Evaluation Clinic for hereditary screening.