FORCE - Facing Our Risk of Cancer Empowered  University of South Florida

Medical Decision-making

How does hysterectomy vs. no hysterectomy during risk reducing salpingo-oophorectomy affect outcomes for women with BRCA mutations?

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.

Measuring the quality of information and the amount of misinformation doctors are giving their patients about cancer risk assessment and risk management.

Genetics is a rapidly advancing area of science and medicine. Genetic testing has become more complicated with the discovery of new genes that affect cancer risk. Guidelines recommend that people speak with trained experts known as genetic counselors before undergoing genetic testing. As the cost of genetic testing has decreased, more people are turning to health care providers without expertise in genetics for information about genetic testing and medical options for managing risk. There is a lack of research on the quality of the information and the amount of misinformation that health care providers are sharing with patients with regards to cancer genetic testing, and the best ways to assure that health care providers are following recommended national guidelines.

Research Prioritization Process

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.

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ABOUT is a Patient-Powered Research Network in PCORnet®,  the National Patient-Centered Clinical Research Network, an initiative funded by the Patient-Centered Outcomes Research Institute (PCORI).

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