I have always had interest in cancer and its genetic origins. In 2008, I started Oregon Ovarian Cancer Registry (OOCR) at OHSU. It has been modeled on Gilda Radner Registry for Ovarian Cancer - the largest and oldest ovarian cancer registry in the country. OOCR has quickly become essential to our own research and it has connected us to the best research groups in the country. In this way many of Oregon 300 new ovarian cancer patients per year have been exposed to the newest advancement and had option to participate in the latest clinical trials. The reasons to motivate me to continue this effort are many - from scientific curiosity, to challenging the ability to organize and maintain large number of sample and large database, to helping individual patients choose the most promising and novel treatments.
Oregon Ovarian Cancer Registry (OOCR) was founded at OHSU in 2008. It is a library of ovarian cancer data gathered from families across the Northwest. Participants contribute health histories that are carefully documented and reviewed. Women also donate blood and tissue samples for research, current and future. Researchers search the data for patterns of cancer in families and signs of inherited syndromes, such as the BRCA mutation. The registry serves patients, their families, and researchers by developing improved cancer screening methods and novel treatment for ovarian cancer. So far the registry has been involved in several international collaborative efforts that led, for example, to identification of over 12 new ovarian cancer susceptibility gene mutations.
While there are several ovarian cancer registries in the USA, OOCR is unique because it collects and maintains living cells that may be regrown for future research. The OOCR has over 500 participants. The ongoing cataloguing of collected data, and tissue samples is demanding. Collaboration with other institutions, in particular with Ovarian Cancer Association Consortium, the largest international collaborative exploring genetic variations and predisposition for ovarian cancer, has become extensive. Therefore a dedicated Registry Coordinator would help systemize and maintain and grow this unique registry that serve families and researchers across the country and contributes to global research on ovarian cancer.
Why is this important?
OOCR allows researchers to collect critical data from ovarian cancer patients and/or their kin in an effort to uncover cancer patterns, improve screening methods, and provide ongoing education and promotion of current information, as well as new discoveries.
Who will benefit?
Anyone with diagnosis of ovarian cancer or their relatives may participate in the Registry which truly has potential to benefit all women by identifying genetic and other risk factors for the disease. it also benefits patient with ovarian cancer by participating in research aimed at detection of novel treatment for ovarian cancer, based on tumor molecular profiles.