National guidelines (NCCN) recommend risk-reducing removal of the ovaries and tubes for women with a BRCA1 or BRCA2 mutation between the ages of 35-40 and when childbearing is complete. However there are no guidelines and little research on patient outcomes to guide decision-making around whether or not women should remove their uterus at the same time. Based on our ABOUT engagement survey, about ½ of women with mutations remove their uterus and the other half do not. This study would look at the long-term outcomes and satisfaction level for women with mutations with and without hysterectomy to determine which option leads to the best outcomes for which patients.
Despite increasing uptake of genetic testing due to more awareness, more access to testing and lowered cost of testing, only a small percentage of men who meet guidelines actually undergo genetic testing. This research would look at whether messaging developed and delivered by patients improves uptake of genetic counseling and testing by men who meet national guidelines.
ABOUT's patient-driven research process, known as "GAP360" takes unanswered medical questions submitted by the community and turns them into well-defined research questions that can be answered through ABOUT research. GAP stands for Generate, Assess, Prioritize, Plan, Perform, and Publish — the steps that are involved in this process.