Pathways to Prevention Registry
The GenRISK Adult Genetics Program has a voluntary registry that allows us to follow our patients over time. Being part of the registry means you will be asked to fill out a survey every year. We are especially interested in learning about what our patients do with the results of their genetic consultation. Do they change their lifestyle? Do they manage their risk for disease differently? How does the information affect them and their family? Have they experienced discrimination as a result of their genetic consultation? So far, our research shows that our patients are not experiencing discrimination as a result of genetic risk assessment.
In some cases, an inherited risk for disease seems likely but the gene responsible has not yet been identified. The GenRISK Adult Genetics Program can help link families with researchers studying that disease. We can contact researchers for you and help you become part of the gene discovery studies. Although being part of research studies doesn't always give you answers, it does allow you to contribute to science.
The GenRISK team works with researchers at Cedars-Sinai and other places to find better drugs, screening tools and treatments. We often refer our patients to clinical trials if they fit the study and want to be part of it. The for example, works with women at higher risk for ovarian cancer. This program tries new screening and diagnostic tools to find early signs of ovarian cancer. Dr. Alan Waxman in Cedars-Sinai's S. Mark Taper Foundation Imaging Center is looking at the use of PET scans to diagnose breast cancer at very early stages in high-risk women.