Over the past thirty years there have been several Registry findings, some of which include:
The BRCA 1 gene linked to germ line ovarian cancer, BRCA 1 / 2 mutations as indicators for high grade tumors, oral contraceptive use & links to mutation carriers, and the link of other cancer markers to ovarian cancer. The primary research focus of the Registry is to understand the genetic basis of ovarian cancer. We know that genetic mutations in the BRCA 1 / 2 gene accounts for only 30-40% of individuals at high risk of developing ovarian cancer. This suggests that there are additional genes responsible for ovarian cancer. If we can identify the genes that predispose to ovarian cancer, we can then develop and offer a new test to women, so that they can make informed, educated decisions about their best course of action & treatment. In addition, these new genes could become targets for therapeutic intervention.
M. Steven Piver, MD, LLD
Past Research Projects
Lessons from the First 20 Years of the Gilda Radner Familial Ovarian Cancer Registry
Gynecologic Oncology, 2002
Because cancer is a complicated and frequently evolving set of diseases, research can take years and even decades before having a direct impact on patient care. That makes the significant findings discovered thanks to the Gilda Radner Familial Ovarian Cancer Registry in just over twenty years – from 1981 until the publishing of this paper in 2002 – even more remarkable.
Today, it’s commonly understood that ovarian cancer, like many other kinds of cancer, can be linked to inherited mutations within a family. But before these findings, which were only widely accepted in the mid-1990s, it was unknown why some families would have multiple cases of the disease. In the 1970s, scientists thought that environmental factors may play a role in these cases.
Therefore, the Gilda Radner Familial Ovarian Cancer Registry was established in an attempt to document the number of cases of ovarian cancer occurring in the United States, with the goal of linking them to potential environmental factors. Instead, the collection of this data made it possible for scientists to study the links between a family’s genetic make-up and their likelihood of being diagnosed.
Other important discoveries made possible by the registry include: distinguishing between the causes of site-specific ovarian cancer and cases where cancer presents in both the ovaries and breast; the importance of a patient’s age at the time of diagnosis and the impact that has on the effectiveness of screening and preventative measures; anomalies in the kinds of ovarian tumors that are found in patients with or without the BRCA1 mutation; and when a preventative removal of the ovaries is a patient’s best chance at avoiding ovarian and breast cancers.