Multi-Center Database/Registry of Subjects at High-Risk for Ovarian or Breast Cancer
The Lynne Cohen High-Risk Patient Data Registry seeks to support and facilitate cross-institutional research that will lead to effective prevention strategies and interventions to eliminate the morbidity and mortality due to ovarian cancer.
The specific objectives of the Lynne Cohen High-Risk Patient Registry are to:
- Collect and store uniform demographic, cancer risk, and breast and ovarian disease history, as well as family history of ovarian and breast cancer on patients who are at risk of ovarian or breast cancer or who have had a diagnosis of either cancer.
- Make available summary information regarding patients in the registry to Lynne Cohen Consortium members, and other investigators, who can use the data to plan highly focused research projects and evaluate the feasibility of such projects.
- Make available summary information to the Lynne Cohen Foundation and its donors in order to show the number of women and families who are directly impacted by the Lynne Cohen Preventive Care Programs for Women's Cancers.
Criteria Used to Identify High-Risk Patients in the Lynne Cohen Preventive Care Programs:
- Family history of ovarian/breast cancer
- Personal history of ovarian/breast cancer
- Known BRCA gene mutation in the individual or the family
- Ashkenazi Jewish descent
Snapshot of Our National Impact in 2011:
5,969 Total number of women who have taken action to determine and manage their risk for ovarian/ breast cancer by visiting the Lynne Cohen Preventive Care Programs nationwide since 2001
46.5 Median Age
1,369 Number of women with a known BRCA genetic mutation, thereby increasing her lifetime risk of developing ovarian cancer by as much as 60% and 85% for breast cancer. *Approx. 10% of ovarian/breast cancer cases in the U.S. have a hereditary form of the disease.
3,764 Number of women with a family history of ovarian/breast cancer
17% Percentage of Ashkenazi Jewish ancestry
*The risk for a women in the general population to carry the BRCA1 or BRCA2 gene mutation is 1 in 800. In the Ashkenazi Jewish population it is 1 in 40.
605 Number of women who have undergone preventive or prophylactic mastectomy, bilateral salpingo oophorectomy, or both to reduce her risk for ovarian and/or breast cancer. *Studies have shown that these procedures can reduce a woman’s risk of developing ovarian or breast cancer by more than 90%.
65% Percentage of women diagnosed with ovarian, breast or other forms of cancer as a result of visiting a Lynne Cohen High-Risk Program
679 Number of women who have enrolled in a Lynne Cohen High-Risk Program since January 2011
*Data collected from the Lynne Cohen Consortium Progress Report, Fall 2011 and the Lynne Cohen Patient Data Registry.