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 an extensive, private library of colon cancer data collected from individuals and families across the United States. The registry is a dynamic resource that continues to grow as new patients are enrolled.
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.
How will the OCCR benefit me?
The OCCR provides patients with topical information regarding medical advances in treating colorectal cancer and its familial causes. Registry participants can feel good knowing they are contributing to a lifetime of research opportunities that seek to shed light on the causes of colorectal cancer, and will subsequently be used to develop new treatments and ultimately, discover a cure for the disease. How will my information be used? Federal privacy protections require that all patient personal health information be kept completely confidential. We honor this obligation by storing both electronic and paper patient information in a safe place. In some cases, information is used for research purposes, however, we will not share your personal health information or samples without your written permission.
How can I join the OCCR?
To join the registry, you will be asked to complete a consent form, family history questionnaire and annual updates. In some cases, we may request you contact your family members in order to help us better understand your family health history. Some registry participants will be asked to donate blood or tissue samples. You may choose to withdraw from the OCCR at any time and for any reason.
Research is a part of our multi-disciplinary approach to care at OHSU. The OCCR is an opportunity to participate in a long-term research registry with a special focus on hereditary causes of colorectal cancer.
An educational resource for both patients and healthcare providers, the OCCR supplies topical, practical information on colorectal cancer screening and inherited syndromes.
As the OCCR population grows, the opportunity for clinical research will expand, which will lead to increased knowledge about colorectal cancer and treatment refinements. To schedule an appointment, please call 503 494-8820.