Placer Breast Cancer Foundation funded
Sacramento Area Breast Imaging Registry (SABIR)
Progress report – November, 2019
Breast cancer screening of asymptomatic women and surveillance imaging of women with a personal history of breast cancer are rapidly changing as we realize the limitations of mammography and move toward woman-centered decision making and the development of new imaging modalities. To improve screening and surveillance guidelines, up-to-date evidence on the effectiveness of imaging modalities overall and for women with specific characteristics is urgently needed. Given breast cancer is rare, this requires prospective, longitudinal data collection on a very large cohort of women from screening through diagnosis, treatment, surveillance, and death.
With funding from the Placer Breast Cancer Foundation, we are creating the Sacramento Area Breast Imaging Registry and using data collected by the registry to: (1) answer pressing questions about the best ways to provide breast cancer screening and surveillance; and (2) create mammography outcome audit reports at the facility and radiologist levels to evaluate their interpretive performance relative to national benchmarks. The registry will be an invaluable resource for local and national breast cancer research.
Progress to date:
- We have built a multidisciplinary team including the primary study team in Public Health Sciences, programming expertise in IT-Health Analytics, database assessment in Medical Diagnostics Informatics (Radiology), and cancer tracking support from the UC Davis Health System Cancer Registrar.
- We received UCD IRB approval in August 2017 to collect data on all women receiving breast imaging at UCD.
- To date, we have enrolled 57,899 women and have obtained data on these women on 245,581 breast imaging exams, 8,459 breast biopsies, and 3,451 breast cancer diagnoses. Data on exams, procedures, and diagnoses from 2008-2019 were obtained from the electronic medical record (EMR) data from UCD mammography facilities located in Sacramento, Folsom, and Roseville. We have mapped these data to the analytic variables we need for our study. We are in the process of mapping these variables to the Breast Cancer Surveillance Consortium (BCSC) format so that we can collaborate on BCSC projects.
- One of our research focuses is patient engagement and inclusion of women’s perspective on the benefits and negative consequences of breast imaging. Using the SABIR database, we have identified women who qualify for two patient surveys:
- Women without breast cancer who received a breast cancer screening exam in the prior year. This survey will help researchers better understand what influences the type of breast cancer screening tests a woman receives, and how women feel about the screening tests. We hope this information will improve what breast cancer screening tests are offered to women. We have invited 1,543 women to take part in the survey and have collected 341 completed survey responses to date.
- Women diagnosed with breast cancer in the prior 15 months. This survey will help researchers better understand what influences the type of breast imaging and treatment women receive, and how women feel about their cancer care. We hope this information will be used to improve breast cancer care. We have invited 218 women to participate in this survey with 74 completed surveys.
- Patient risk factor information collected at each breast imaging examination is only in the EMR starting in June 2017. Thus, we are in the process of abstracting data for all prior exams given this information is critical for out study objectives.
- Our application to link the database to the state cancer registry has passed the initial review and vetting phase. Our project is currently under review and we hope to complete the linkage by the end of 2019.
- We hope to obtain funding to expand the registry to include additional mammography facilities and to maintain the registry (e.g., to download and process new data and to link annually to the state tumor registry and to state death tapes to get follow-up information).
- We have conducted a survey of all breast imaging facilities in the Greater Sacramento area and documented services provided so we can rank priority for inclusion based on those who offer supplemental breast imaging.