Annual Report to the Nation on the Status of Cancer, part 2: Early assessment of the COVID-19 pandemic's impact on cancer diagnosis.

BACKGROUND: With access to cancer care services limited because of coronavirus disease 2019 control measures, cancer diagnosis and treatment have been delayed. The authors explored changes in the counts of US incident cases by cancer type, age, sex, race, and disease stage in 2020. METHODS: Data were extracted from selected US population-based cancer registries for diagnosis years 2015-2020 using first-submission data from the North American Association of Central Cancer Registries. After a quality assessment, the monthly numbers of newly diagnosed cancer cases were extracted for six cancer types: colorectal, female breast, lung, pancreas, prostate, and thyroid. The observed numbers of incident cancer cases in 2020 were compared with the estimated numbers by calculating observed-to-expected (O/E) ratios. The expected numbers of incident cases were extrapolated using Joinpoint trend models. RESULTS: The authors report an O/E ratio <1.0 for major screening-eligible cancer sites, indicating fewer newly diagnosed cases than expected in 2020. The O/E ratios were lowest in April 2020. For every cancer site except pancreas, Asians/Pacific Islanders had the lowest O/E ratio of any race group. O/E ratios were lower for cases diagnosed at localized stages than for cases diagnosed at advanced stages. CONCLUSIONS: The current analysis provides strong evidence for declines in cancer diagnoses, relative to the expected numbers, between March and May of 2020. The declines correlate with reductions in pathology reports and are greater for cases diagnosed at in situ and localized stage, triggering concerns about potential poor cancer outcomes in the coming years, especially in Asians/Pacific Islanders. PLAIN LANGUAGE SUMMARY: To help control the spread of coronavirus disease 2019 (COVID-19), health care organizations suspended nonessential medical procedures, including preventive cancer screening, during early 2020. Many individuals canceled or postponed cancer screening, potentially delaying cancer diagnosis. This study examines the impact of the COVID-19 pandemic on the number of newly diagnosed cancer cases in 2020 using first-submission, population-based cancer registry database. The monthly numbers of newly diagnosed cancer cases in 2020 were compared with the expected numbers based on past trends for six cancer sites. April 2020 had the sharpest decrease in cases compared with previous years, most likely because of the COVID-19 pandemic.

Harnessing the Power of Cancer Registries to Advance Our Understanding of Pediatric Cancer.

In 2020, the North American Association of Central Cancer Registries (NAACCR) was awarded a contract with the National Cancer Institute (NCI) to begin coordination of a new National Childhood Cancer Registry (NCCR), which would build on the existing infrastructure among both Surveillance, Epidemiology, and End Results (SEER) and National Program of Cancer Registries central registries. NCI and NAACCR planned to use the NCCR to securely match children across registries and with external data sources such as genomic data, medical and pharmacy claims, and other novel sources for residential history, financial toxicity and social determinants of health to build a robust database for pediatric cancer reporting and research. These linkages will enable researchers to address issues surrounding late effects of cancer treatment, recurrence, subsequent malignant neoplasms, and other critical outcomes.

The Trajectory of Pediatric Cancer Data and Collection in the United States.

The past several years have been marked by substantial growth in pediatric cancer data and collection across the world. In the United States, multiple projects and standard setters have laid a foundation for the growth of this data, and the need for an overview and explanation of a few of the programs directly relevant to cancer registrars has become apparent. This article will discuss 3 initiatives that highlight many of the efforts and intricacies involved with the collection of pediatric cancer data in the cancer registry world: the National Childhood Cancer Registry, the Toronto Pediatric Cancer Stage Guidelines, and the Pediatric Site-Specific Data Items Work Group.

Linking population-based cohorts with cancer registries in LMIC: a case study and lessons learnt in India.

OBJECTIVES: In resource-constrained settings, cancer epidemiology research typically relies on self-reported diagnoses. To test a more systematic alternative approach, we assessed the feasibility of linking a cohort with a cancer registry. SETTING: Data linkage was performed between a population-based cohort in Chennai, India, with a local population-based cancer registry. PARTICIPANTS: Data set of Centre for Cardiometabolic Risk Reduction in South-Asia (CARRS) cohort participants (N=11 772) from Chennai was linked with the cancer registry data set for the period 1982-2015 (N=140 986). METHODS AND OUTCOME MEASURES: Match*Pro, a probabilistic record linkage software, was used for computerised linkages followed by manual review of high scoring records. The variables used for linkage included participant name, gender, age, address, Postal Index Number and father's and spouse's name. Registry records between 2010 and 2015 and between 1982 and 2015, respectively, represented incident and all (both incident and prevalent) cases. The extent of agreement between self-reports and registry-based ascertainment was expressed as the proportion of cases found in both data sets among cases identified independently in each source. RESULTS: There were 52 self-reported cancer cases among 11 772 cohort participants, but 5 cases were misreported. Of the remaining 47 eligible self-reported cases (incident and prevalent), 37 (79%) were confirmed by registry linkage. Among 29 self-reported incident cancers, 25 (86%) were found in the registry. Registry linkage also identified 24 previously not reported cancers; 12 of those were incident cases. The likelihood of linkage was higher in more recent years (2014-2015). CONCLUSIONS: Although linkage variables in this study had limited discriminatory power in the absence of a unique identifier, an appreciable proportion of self-reported cases were confirmed in the registry via linkages. More importantly, the linkages also identified many previously unreported cases. These findings offer new insights that can inform future cancer surveillance and research in low-income and middle-income countries.

Annual report to the nation on the status of cancer, part 1: National cancer statistics.

BACKGROUND: The American Cancer Society, the Centers for Disease Control and Prevention, the National Cancer Institute, and the North American Association of Central Cancer Registries collaborate to provide annual updates on cancer occurrence and trends in the United States. METHODS: Data on new cancer diagnoses during 2001-2018 were obtained from the North American Association of Central Cancer Registries' Cancer in North America Incidence file, which is comprised of data from Centers for Disease Control and Prevention-funded and National Cancer Institute-funded, population-based cancer registry programs. Data on cancer deaths during 2001-2019 were obtained from the National Center for Health Statistics' National Vital Statistics System. Five-year average incidence and death rates along with trends for all cancers combined and for the leading cancer types are reported by sex, racial/ethnic group, and age. RESULTS: Overall cancer incidence rates were 497 per 100,000 among males (ranging from 306 among Asian/Pacific Islander males to 544 among Black males) and 431 per 100,000 among females (ranging from 309 among Asian/Pacific Islander females to 473 among American Indian/Alaska Native females) during 2014-2018. The trend during the corresponding period was stable among males and increased 0.2% on average per year among females, with differing trends by sex, racial/ethnic group, and cancer type. Among males, incidence rates increased for three cancers (including pancreas and kidney), were stable for seven cancers (including prostate), and decreased for eight (including lung and larynx) of the 18 most common cancers considered in this analysis. Among females, incidence rates increased for seven cancers (including melanoma, liver, and breast), were stable for four cancers (including uterus), and decreased for seven (including thyroid and ovary) of the 18 most common cancers. Overall cancer death rates decreased by 2.3% per year among males and by 1.9% per year among females during 2015-2019, with the sex-specific declining trend reflected in every major racial/ethnic group. During 2015-2019, death rates decreased for 11 of the 19 most common cancers among males and for 14 of the 20 most common cancers among females, with the steepest declines (>4% per year) reported for lung cancer and melanoma. Five-year survival for adenocarcinoma and neuroendocrine pancreatic cancer improved between 2001 and 2018; however, overall incidence (2001-2018) and mortality (2001-2019) continued to increase for this site. Among children (younger than 15 years), recent trends were stable for incidence and decreased for mortality; and among, adolescents and young adults (aged 15-39 years), recent trends increased for incidence and declined for mortality. CONCLUSIONS: Cancer death rates continued to decline overall, for children, and for adolescents and young adults, and treatment advances have led to accelerated declines in death rates for several sites, such as lung and melanoma. The increases in incidence rates for several common cancers in part reflect changes in risk factors, screening test use, and diagnostic practice. Racial/ethnic differences exist in cancer incidence and mortality, highlighting the need to understand and address inequities. Population-based incidence and mortality data inform prevention, early detection, and treatment efforts to help reduce the cancer burden in the United States.

Ascertainment of Incident Cancer by US Population-Based Cancer Registries Versus Self-Reports and Death Certificates in a Nationwide Cohort Study, the US Radiologic Technologists Study.

Follow-up of US cohort members for incident cancer is time-consuming, is costly, and often results in underascertainment when the traditional methods of self-reporting and/or medical record validation are used. We conducted one of the first large-scale investigations to assess the feasibility, methods, and benefits of linking participants in the US Radiologic Technologists (USRT) Study (n = 146,022) with the majority of US state or regional cancer registries. Follow-up of this cohort has relied primarily on questionnaires (mailed approximately every 10 years) and linkage with the National Death Index. We compared the level of agreement and completeness of questionnaire/death-certificate-based information with that of registry-based (43 registries) incident cancer follow-up in the USRT cohort. Using registry-identified first primary cancers from 1999-2012 as the gold standard, the overall sensitivity was 46.5% for self-reports only and 63.0% for both self-reports and death certificates. Among the 37.0% false-negative reports, 27.8% were due to dropout, while 9.2% were due to misreporting. The USRT cancer reporting patterns differed by cancer type. Our study indicates that linkage to state cancer registries would greatly improve completeness and accuracy of cancer follow-up in comparison with questionnaire self-reporting. These findings support ongoing development of a national US virtual pooled registry with which to streamline cohort linkages.

Impact of the COVID-19 pandemic on population-based cancer registry.

The COVID-19 pandemic has caused disruptions to national health systems and impacted health outcomes worldwide. However, the extent to which surveillance systems, such as population-based cancer registration, have been affected was not reported. Here we sought to evaluate the effect of the pandemic on registry operations across different areas and development levels worldwide. We investigated the impact of COVID-19 on three main areas of cancer registry operations: staffing, financing and data collection. An online survey was administered to 750 member registries of the International Association for Cancer Registries. Among 212 responding registries from 90 countries, 65.6% reported a disruption in operations, ranging between 45% in south-eastern Asia and 87% in the Latin America and Caribbean. Active data collection was disrupted more than case notifications or hybrid methods. In countries categorized with low Human Development Index (HDI), a greater number of registries reported a negative impact (81.3%) than in very high HDI countries (57.8%). This contrast was highest in term of impact on financing: 9/16 (56%) registries in low HDI countries reported a current or an expected decline in funding, compared to 7/108 (7%) in very high HDI countries. With many cancer registries worldwide reporting disruption to their operations during the early COVID-19 pandemic, urgent actions are needed to ensure their continuity. Governmental commitment to support future registry operations as an asset to disease control, alongside a move toward electronic reporting systems will help to ensure the sustainability of cancer surveillance worldwide.

Development of paediatric non-stage prognosticator guidelines for population-based cancer registries and updates to the 2014 Toronto Paediatric Cancer Stage Guidelines.

Population-based cancer registries (PBCRs) generate measures of cancer incidence and survival that are essential for cancer surveillance, research, and cancer control strategies. In 2014, the Toronto Paediatric Cancer Stage Guidelines were developed to standardise how PBCRs collect data on the stage at diagnosis for childhood cancer cases. These guidelines have been implemented in multiple jurisdictions worldwide to facilitate international comparative studies of incidence and outcome. Robust stratification by risk also requires data on key non-stage prognosticators (NSPs). Key experts and stakeholders used a modified Delphi approach to establish principles guiding paediatric cancer NSP data collection. With the use of these principles, recommendations were made on which NSPs should be collected for the major malignancies in children. The 2014 Toronto Stage Guidelines were also reviewed and updated where necessary. Wide adoption of the resultant Paediatric NSP Guidelines and updated Toronto Stage Guidelines will enhance the harmonisation and use of childhood cancer data provided by PBCRs.

Annual report to the nation on the status of cancer, part II: Progress toward Healthy People 2020 objectives for 4 common cancers.

BACKGROUND: The Centers for Disease Control and Prevention, the American Cancer Society, the National Cancer Institute, and the North American Association of Central Cancer Registries collaborate to provide annual updates on cancer occurrence and trends in the United States and to address a special topic of interest. Part I of this report focuses on national cancer statistics, and part 2 characterizes progress in achieving select Healthy People 2020 cancer objectives. METHODS: For this report, the authors selected objectives-including death rates, cancer screening, and major risk factors-related to 4 common cancers (lung, colorectal, female breast, and prostate). Baseline values, recent values, and the percentage change from baseline to recent values were examined overall and by select sociodemographic characteristics. Data from national surveillance systems were obtained from the Healthy People 2020 website. RESULTS: Targets for death rates were met overall and in most sociodemographic groups, but not among males, blacks, or individuals in rural areas, although these groups did experience larger decreases in rates compared with other groups. During 2007 through 2017, cancer death rates decreased 15% overall, ranging from -4% (rural) to -22% (metropolitan). Targets for breast and colorectal cancer screening were not yet met overall or in any sociodemographic groups except those with the highest educational attainment, whereas lung cancer screening was generally low (<10%). Targets were not yet met overall for cigarette smoking, recent smoking cessation, excessive alcohol use, or obesity but were met for secondhand smoke exposure and physical activity. Some sociodemographic groups did not meet targets or had less improvement than others toward reaching objectives. CONCLUSIONS: Monitoring trends in cancer risk factors, screening test use, and mortality can help assess the progress made toward decreasing the cancer burden in the United States. Although many interventions to reduce cancer risk factors and promote healthy behaviors are proven to work, they may not be equitably applied or work well in every community. Implementing cancer prevention and control interventions that are sustainable, focused, and culturally appropriate may boost success in communities with the greatest need, ensuring that all Americans can access a path to long, healthy, cancer-free lives.

Annual report to the nation on the status of cancer, part I: National cancer statistics.

BACKGROUND: The American Cancer Society, the Centers for Disease Control and Prevention, the National Cancer Institute, and the North American Association of Central Cancer Registries collaborate to provide annual updates on cancer occurrence and trends in the United States. METHODS: Data on new cancer diagnoses during 2001 through 2016 were obtained from the Centers for Disease Control and Prevention-funded and National Cancer Institute-funded population-based cancer registry programs and compiled by the North American Association of Central Cancer Registries. Data on cancer deaths during 2001 through 2017 were obtained from the National Center for Health Statistics' National Vital Statistics System. Trends in incidence and death rates for all cancers combined and for the leading cancer types by sex, racial/ethnic group, and age were estimated by joinpoint analysis and characterized by the average annual percent change during the most recent 5 years (2012-2016 for incidence and 2013-2017 for mortality). RESULTS: Overall, cancer incidence rates decreased 0.6% on average per year during 2012 through 2016, but trends differed by sex, racial/ethnic group, and cancer type. Among males, cancer incidence rates were stable overall and among non-Hispanic white males but decreased in other racial/ethnic groups; rates increased for 5 of the 17 most common cancers, were stable for 7 cancers (including prostate), and decreased for 5 cancers (including lung and bronchus [lung] and colorectal). Among females, cancer incidence rates increased during 2012 to 2016 in all racial/ethnic groups, increasing on average 0.2% per year; rates increased for 8 of the 18 most common cancers (including breast), were stable for 6 cancers (including colorectal), and decreased for 4 cancers (including lung). Overall, cancer death rates decreased 1.5% on average per year during 2013 to 2017, decreasing 1.8% per year among males and 1.4% per year among females. During 2013 to 2017, cancer death rates decreased for all cancers combined among both males and females in each racial/ethnic group, for 11 of the 19 most common cancers among males (including lung and colorectal), and for 14 of the 20 most common cancers among females (including lung, colorectal, and breast). The largest declines in death rates were observed for melanoma of the skin (decreasing 6.1% per year among males and 6.3% among females) and lung (decreasing 4.8% per year among males and 3.7% among females). Among children younger than 15 years, cancer incidence rates increased an average of 0.8% per year during 2012 to 2016, and cancer death rates decreased an average of 1.4% per year during 2013 to 2017. Among adolescents and young adults aged 15 to 39 years, cancer incidence rates increased an average of 0.9% per year during 2012 to 2016, and cancer death rates decreased an average of 1.0% per year during 2013 to 2017. CONCLUSIONS: Although overall cancer death rates continue to decline, incidence rates are leveling off among males and are increasing slightly among females. These trends reflect population changes in cancer risk factors, screening test use, diagnostic practices, and treatment advances. Many cancers can be prevented or treated effectively if they are found early. Population-based cancer incidence and mortality data can be used to inform efforts to decrease the cancer burden in the United States and regularly monitor progress toward goals.

Cancer Registration in the Caribbean.

The Caribbean region faces a growing burden due to cancer. Urgent action needs to be taken to monitor this disease and inform measures required for prevention and control. Cancer surveillance, supported by the implementation of population-based cancer registries (PBCRs), is an important component of cancer prevention and control strategies. Yet, the ability of some Caribbean countries to implement infrastructure needed for sustainable, high-quality PBCRs remains a challenge given limitations in resources and competing health priorities. While some Caribbean cancer registries have been successful in contributing high-quality cancer data in support of national cancer control and prevention efforts, this represents coverage of only a small percentage of the Caribbean population, and these data have limited generalizability to other countries in the region. The International Agency for Research on Cancer (IARC) Caribbean Cancer Registry Hub (http:// caribbeancrh.carpha.org) is performing an important role in providing technical support, capacity building, advocacy, and research needed for strengthening cancer registration in the region. The Caribbean Hub engages high-level political and technical stakeholders, and shares appropriate and relevant resources and expertise to help health care and public health professionals and policymakers understand the importance of data generated from PBCRs for cancer control planning and monitoring. Through the provision of technical support for the implementation or strengthening of PBCRs in the region, the Caribbean Hub will support efforts being made by Caribbean countries to establish high-quality PBCRs. The Hub will continue to facilitate capacity building through training workshops and other similar activities as well as support training opportunities for cancer registries throughout the region. Research initiatives will continue to be conducted and supported by the Caribbean Hub to identify priorities and to monitor and evaluate cancer control strategies in the region. Through the work of the IARC Caribbean Cancer Registry Hub, Caribbean countries are better equipped to overcome challenges faced and strengthen cancer surveillance nationally and regionally. This is an important step towards mitigating the cancer burden and improving cancer prevention and control measures in the Caribbean.

Annual Report to the Nation on the Status of Cancer, Featuring Cancer in Men and Women Age 20-49 Years.

BACKGROUND: The American Cancer Society, Centers for Disease Control and Prevention, National Cancer Institute, and North American Association of Central Cancer Registries provide annual updates on cancer occurrence and trends by cancer type, sex, race, ethnicity, and age in the United States. This year's report highlights the cancer burden among men and women age 20-49 years. METHODS: Incidence data for the years 1999 to 2015 from the Centers for Disease Control and Prevention- and National Cancer Institute-funded population-based cancer registry programs compiled by the North American Association of Central Cancer Registries and death data for the years 1999 to 2016 from the National Vital Statistics System were used. Trends in age-standardized incidence and death rates, estimated by joinpoint, were expressed as average annual percent change. RESULTS: Overall cancer incidence rates (per 100 000) for all ages during 2011-2015 were 494.3 among male patients and 420.5 among female patients; during the same time period, incidence rates decreased 2.1% (95% confidence interval [CI] = -2.6% to -1.6%) per year in men and were stable in females. Overall cancer death rates (per 100 000) for all ages during 2012-2016 were 193.1 among male patients and 137.7 among female patients. During 2012-2016, overall cancer death rates for all ages decreased 1.8% (95% CI = -1.8% to -1.8%) per year in male patients and 1.4% (95% CI = -1.4% to -1.4%) per year in females. Important changes in trends were stabilization of thyroid cancer incidence rates in women and rapid declines in death rates for melanoma of the skin (both sexes). Among adults age 20-49 years, overall cancer incidence rates were substantially lower among men (115.3 per 100 000) than among women (203.3 per 100 000); cancers with the highest incidence rates (per 100 000) among men were colon and rectum (13.1), testis (10.7), and melanoma of the skin (9.8), and among women were breast (73.2), thyroid (28.4), and melanoma of the skin (14.1). During 2011 to 2015, the incidence of all invasive cancers combined among adults age 20-49 years decreased -0.7% (95% CI = -1.0% to -0.4%) among men and increased among women (1.3%, 95% CI = 0.7% to 1.9%). The death rate for (per 100 000) adults age 20-49 years for all cancer sites combined during 2012 to 2016 was 22.8 among men and 27.1 among women; during the same time period, death rates decreased 2.3% (95% CI = -2.4% to -2.2%) per year among men and 1.7% (95% CI = -1.8% to -1.6%) per year among women. CONCLUSIONS: Among people of all ages and ages 20-49 years, favorable as well as unfavorable trends in site-specific cancer incidence were observed, whereas trends in death rates were generally favorable. Characterizing the cancer burden may inform research and cancer-control efforts.

Annual Report to the Nation on the Status of Cancer, part I: National cancer statistics.

BACKGROUND: The American Cancer Society (ACS), the Centers for Disease Control and Prevention (CDC), the National Cancer Institute (NCI), and the North American Association of Central Cancer Registries (NAACCR) collaborate to provide annual updates on cancer occurrence and trends in the United States. METHODS: Incidence data were obtained from the CDC-funded and NCI-funded population-based cancer registry programs and compiled by NAACCR. Data on cancer deaths were obtained from the National Center for Health Statistics National Vital Statistics System. Trends in age-standardized incidence and death rates for all cancers combined and for the leading cancer types by sex, race, and ethnicity were estimated by joinpoint analysis and expressed as the annual percent change. Stage distribution and 5-year survival by stage at diagnosis were calculated for breast cancer, colon and rectum (colorectal) cancer, lung and bronchus cancer, and melanoma of the skin. RESULTS: Overall cancer incidence rates from 2008 to 2014 decreased by 2.2% per year among men but were stable among women. Overall cancer death rates from 1999 to 2015 decreased by 1.8% per year among men and by 1.4% per year among women. Among men, incidence rates during the most recent 5-year period (2010-2014) decreased for 7 of the 17 most common cancer types, and death rates (2011-2015) decreased for 11 of the 18 most common types. Among women, incidence rates declined for 7 of the 18 most common cancers, and death rates declined for 14 of the 20 most common cancers. Death rates decreased for cancer sites, including lung and bronchus (men and women), colorectal (men and women), female breast, and prostate. Death rates increased for cancers of the liver (men and women); pancreas (men and women); brain and other nervous system (men and women); oral cavity and pharynx (men only); soft tissue, including heart (men only); nonmelanoma skin (men only); and uterus. Incidence and death rates were higher among men than among women for all racial and ethnic groups. For all cancer sites combined, black men and white women had the highest incidence rates compared with other racial groups, and black men and black women had the highest death rates compared with other racial groups. Non-Hispanic men and women had higher incidence and mortality rates than those of Hispanic ethnicity. Five-year survival for cases diagnosed from 2007 through 2013 ranged from 100% (stage I) to 26.5% (stage IV) for female breast cancer, from 88.1% (stage I) to 12.6% (stage IV) for colorectal cancer, from 55.1% (stage I) to 4.2% (stage IV) for lung and bronchus cancer, and from 99.5% (stage I) to 16% (stage IV) for melanoma of the skin. Among children, overall cancer incidence rates increased by 0.8% per year from 2010 to 2014, and overall cancer death rates decreased by 1.5% per year from 2011 to 2015. CONCLUSIONS: For all cancer sites combined, cancer incidence rates decreased among men but were stable among women. Overall, there continue to be significant declines in cancer death rates among both men and women. Differences in rates and trends by race and ethnic group remain. Progress in reducing cancer mortality has not occurred for all sites. Examining stage distribution and 5-year survival by stage highlights the potential benefits associated with early detection and treatment. Cancer 2018;124:2785-2800. © 2018 American Cancer Society.

Annual Report to the Nation on the Status of Cancer, part II: Recent changes in prostate cancer trends and disease characteristics.

BACKGROUND: Temporal trends in prostate cancer incidence and death rates have been attributed to changing patterns of screening and improved treatment (mortality only), among other factors. This study evaluated contemporary national-level trends and their relations with prostate-specific antigen (PSA) testing prevalence and explored trends in incidence according to disease characteristics with stage-specific, delay-adjusted rates. METHODS: Joinpoint regression was used to examine changes in delay-adjusted prostate cancer incidence rates from population-based US cancer registries from 2000 to 2014 by age categories, race, and disease characteristics, including stage, PSA, Gleason score, and clinical extension. In addition, the analysis included trends for prostate cancer mortality between 1975 and 2015 by race and the estimation of PSA testing prevalence between 1987 and 2005. The annual percent change was calculated for periods defined by significant trend change points. RESULTS: For all age groups, overall prostate cancer incidence rates declined approximately 6.5% per year from 2007. However, the incidence of distant-stage disease increased from 2010 to 2014. The incidence of disease according to higher PSA levels or Gleason scores at diagnosis did not increase. After years of significant decline (from 1993 to 2013), the overall prostate cancer mortality trend stabilized from 2013 to 2015. CONCLUSIONS: After a decline in PSA test usage, there has been an increased burden of late-stage disease, and the decline in prostate cancer mortality has leveled off. Cancer 2018;124:2801-2814. © 2018 American Cancer Society.

The history and use of cancer registry data by public health cancer control programs in the United States.

Because cancer registry data provide a census of cancer cases, registry data can be used to: 1) define and monitor cancer incidence at the local, state, and national levels; 2) investigate patterns of cancer treatment; and 3) evaluate the effectiveness of public health efforts to prevent cancer cases and improve cancer survival. The purpose of this article is to provide a broad overview of the history of cancer surveillance programs in the United States, and illustrate the expanding ways in which cancer surveillance data are being made available and contributing to cancer control programs. The article describes the building of the cancer registry infrastructure and the successful coordination of efforts among the 2 federal agencies that support cancer registry programs, the Centers for Disease Control and Prevention and the National Cancer Institute, and the North American Association of Central Cancer Registries. The major US cancer control programs also are described, including the National Comprehensive Cancer Control Program, the National Breast and Cervical Cancer Early Detection Program, and the Colorectal Cancer Control Program. This overview illustrates how cancer registry data can inform public health actions to reduce disparities in cancer outcomes and may be instructional for a variety of cancer control professionals in the United States and in other countries. Cancer 2017;123:4969-76. Published 2017. This article is a U.S. Government work and is in the public domain in the USA.

Geospatial cryptography: enabling researchers to access private, spatially referenced, human subjects data for cancer control and prevention.

As the volume, accuracy and precision of digital geographic information have increased, concerns regarding individual privacy and confidentiality have come to the forefront. Not only do these challenge a basic tenet underlying the advancement of science by posing substantial obstacles to the sharing of data to validate research results, but they are obstacles to conducting certain research projects in the first place. Geospatial cryptography involves the specification, design, implementation and application of cryptographic techniques to address privacy, confidentiality and security concerns for geographically referenced data. This article defines geospatial cryptography and demonstrates its application in cancer control and surveillance. Four use cases are considered: (1) national-level de-duplication among state or province-based cancer registries; (2) sharing of confidential data across cancer registries to support case aggregation across administrative geographies; (3) secure data linkage; and (4) cancer cluster investigation and surveillance. A secure multi-party system for geospatial cryptography is developed. Solutions under geospatial cryptography are presented and computation time is calculated. As services provided by cancer registries to the research community, de-duplication, case aggregation across administrative geographies and secure data linkage are often time-consuming and in some instances precluded by confidentiality and security concerns. Geospatial cryptography provides secure solutions that hold significant promise for addressing these concerns and for accelerating the pace of research with human subjects data residing in our nation's cancer registries. Pursuit of the research directions posed herein conceivably would lead to a geospatially encrypted geographic information system (GEGIS) designed specifically to promote the sharing and spatial analysis of confidential data. Geospatial cryptography holds substantial promise for accelerating the pace of research with spatially referenced human subjects data.

Follow-up of a Large Prospective Cohort in the United States Using Linkage With Multiple State Cancer Registries.

All states in the United States now have a well-established cancer registry. Linkage with these registries may be a cost-effective method of follow-up for cancer incidence in multistate cohort studies. However, the sensitivity of linkage with the current network of state registries for detecting incident cancer diagnoses within cohort studies is not well-documented. We examined the sensitivity of registry linkage among 39,368 men and women from 23 states who enrolled in the Cancer Prevention Study-3 cohort during 2006-2009 and had the opportunity to self-report cancer diagnoses on a questionnaire in 2011. All participants provided name and birthdate, and 94% provided a complete social security number. Of 378 cancer diagnoses between enrollment and 2010 identified through self-report and verified with medical records, 338 were also detected by linkage with the 23 state cancer registries (sensitivity of 89%, 95% confidence interval (CI): 86, 92). Sensitivity was lower for hematologic cancers (69%, 95% CI: 41, 89) and melanoma (70%, 95% CI: 57, 81). After excluding hematologic cancers and melanoma, sensitivity was 94% (95% CI: 91, 97). Our results indicate that linkage with multiple cancer registries can be a sensitive method for ascertaining incident cancers, other than hematologic cancers and melanoma, in multistate cohort studies.