Hereditary breast and ovarian cancer syndrome (HBOCS) is an inherited condition that increases the risk of developing several types of cancer; however, the true burden of HBOCS-related cancers remains unclear at the population level. We used 2015-2019 breast and ovarian cancer data (N=55,437) from the New Jersey State Cancer Registry to estimate the age-adjusted incidence of HBOCS-related breast and ovarian cancers in New Jersey, overall and by county. Cancers meeting 5 HBOCS diagnostic characteristics selected from the 2021 National Comprehensive Cancer Network risk assessment guidelines were flagged as possibly being HBOCS-related and referred to as "possible-HBOCS (pHBOCS)." We evaluated the racial/ethnic and stage patterns of HBOCS cancers and compared them to all cancers to further characterize the HBOCS burden. Age-adjusted incidence rates (AAIR) per 100,000 population, rate ratios (RR), and 95% confidence intervals (CI) were computed using the Surveillance, Epidemiology, and End Results Program (SEER) *Stat Database. We identified 12,679 pHBOCS cancers among NJ residents from 2015-2019. The female AAIR of pHBOCS breast and ovarian cancers was 50.6 per 100,000 population. The rates of pHBOCS varied by county, and pHBOCS county rates varied by race. Among Hispanic women, the incidence was significantly higher in Hunterdon County (AAIR 115, 95% CI:68.4-181.1) than statewide (AAIR 40.6, 95% CI:38.7-42.6). The pHBOCS incidence was significantly lower for Asian/Pacific Islander (RR=0.85, 95% CI:0.80-0.91), Hispanic (RR=0.74, 95% CI:0.70-0.79), and non-Hispanic Black women (RR=0.90 95% CI:0.85-0.95) than non-Hispanic White women. Compared to local-stage ovarian cancers, the incidence of distant-stage was significantly higher in the overall cancer population (RR=2.59, 95% CI:2.37-2.83) and the pHBOCS cancers (RR=3.22, 95% CI:2.93-3.55). The rate of regional-stage ovarian cancers was only significantly higher than local for the pHBOCS group (RR=1.21, 95% CI:1.08-1.36). This study can be used as a starting point for building a framework that better estimates the population burden of HBOCS cancers. Quantifying the HBOCS impact improves our understanding of the true burden. Due to data availability limitations, true estimates could not be calculated. Policies supporting population-level, genetic/family history data collection are needed to accurately quantify HBOCS incidence.

Spatially linking cancer registry records to information describing the communities where patients live can enhance the utility of registry data. Here, we describe the ongoing development of an application, the Population Cancer Assessment and Surveillance Engine (PopCASE), that will allow central cancer registries or their designees to set up a population cancer data platform linking a registry's data with community data. PopCASE links registry records by patient residential address to demographic, socioeconomic, household, transportation, healthcare access, screening, risk factor, and other community metrics. Users can query the data by demographic, geographic, or disease criteria via a user interface and receive results, including case counts, age-adjusted incidence and mortality, stage at diagnosis, time-to-treatment, and dozens of community measures stratified by county, census place ("municipality"), zip code tabulation area (ZCTA), and census tract. PopCASE may also be used to create patient-level linked research data sets. We anticipate two likely implementation scenarios: 1) a cancer center where a research team with appropriate institutional review board (IRB) approval uses an instance of PopCASE for their catchment-level population cancer research in a secure data environment, and 2) a central cancer registry that hosts their own secure instance of PopCASE.

Accurate geospatial data is foundational to cancer research, supporting efforts in cancer control and prevention programs, exposure analysis, and understanding of the socio-economic determinants of health.1-5 As a population-based cancer registry, the Louisiana Tumor Registry (LTR) supplies data to national cancer datasets via North American Association of Central Cancer Registries (NAACCR), Centers for Disease Control (CDC), and Surveillance, Epidemiology, and End Results Program (SEER), while also publishing geographically-detailed cancer statistics for the state. Beyond these national contributions, LTR data has been instrumental in a wide range of cancer research applications, including but not limited to environmental exposure analysis.6 Recognizing the need for cancer statistics at the community level, the Louisiana State Legislature enacted R.S. 40:1105.10 in 2018, requiring an annual cancer incidence report by census tract.7 As a SEER registry, LTR has utilized the SEER Data Management System (SEER*DMS) since 2009, integrating the NAACCR-supported and NCI-funded geocoder, Geocodio API. While individual registries and jurisdictions will possess varying resources in obtaining complete and accurate geospatial data, all NAACCR registries have access to Geocodio. This report summarizes the strategies and practices LTR has implemented to achieve high quality geospatial data and provides guidelines that other registries can implement to meet this critical objective.