Ovarian Cancer Registry

What is the Oregon Ovarian Cancer Registry?

The Oregon Ovarian Cancer Registry (OOCR) is a comprehensive, private library of ovarian cancer data gathered from families across the Northwest. Participants contribute health histories that are carefully documented and reviewed. Researchers search the data for patterns of cancer in families and signs of inherited syndromes, such as the BRCA gene mutation.

Ovarian cancer registries serve patients, their families, the general public and healthcare providers by developing improved hereditary screening methods, providing education and promoting research about ovarian cancer. Registries also store participants’ blood and tissue samples for use in future research.

How will the Oregon Ovarian Cancer Registry benefit me?

The OOCR can help identify individuals and families at risk for ovarian cancer and recommend genetic counseling to those at risk. If needed, the OOCR can coordinate patient care with the Breast/Ovarian Cancer Prevention Clinic for hereditary screening and ongoing care. The OOCR also keeps patients informed of relevant news and medical advances in treating ovarian cancer and its familial causes.

How will my information be used?

Federal privacy protections regulate that all patient personal health information be kept completely confidential. We honor this obligation by storing electronic and printed patient informa¬tion in a safe place. In some cases, information is used for research purposes. However, we will not share information or samples collected for the registry with your employer, insurance company, personal physicians or relatives.

How can I join the Oregon Ovarian Cancer Registry?

If you are interested in joining the OOCR, complete a registry enrollment packet containing a consent form and a family history questionnaire. In some cases, we may ask you to contact your family members in order to help us better under¬stand your family health history. Some registry participants will be asked to donate a blood and tissue sample. You may choose to withdraw from the OOCR at any time and for any reason.