An overview of real-world data sources for oncology and considerations for research.

Generating evidence on the use, effectiveness, and safety of new cancer therapies is a priority for researchers, health care providers, payers, and regulators given the rapid pace of change in cancer diagnosis and treatments. The use of real-world data (RWD) is integral to understanding the utilization patterns and outcomes of these new treatments among patients with cancer who are treated in clinical practice and community settings. An initial step in the use of RWD is careful study design to assess the suitability of an RWD source. This pivotal process can be guided by using a conceptual model that encourages predesign conceptualization. The primary types of RWD included are electronic health records, administrative claims data, cancer registries, and specialty data providers and networks. Careful consideration of each data type is necessary because they are collected for a specific purpose, capturing a set of data elements within a certain population for that purpose, and they vary by population coverage and longitudinality. In this review, the authors provide a high-level assessment of the strengths and limitations of each data category to inform data source selection appropriate to the study question. Overall, the development and accessibility of RWD sources for cancer research are rapidly increasing, and the use of these data requires careful consideration of composition and utility to assess important questions in understanding the use and effectiveness of new therapies.

Current and future cancer staging after neoadjuvant treatment for solid tumors.

Until recently, cancer registries have only collected cancer clinical stage at diagnosis, before any therapy, and pathological stage after surgical resection, provided no treatment has been given before the surgery, but they have not collected stage data after neoadjuvant therapy (NAT). Because NAT is increasingly being used to treat a variety of tumors, it has become important to make the distinction between both the clinical and the pathological assessment without NAT and the assessment after NAT to avoid any misunderstanding of the significance of the clinical and pathological findings. It also is important that cancer registries collect data after NAT to assess response and effectiveness of this treatment approach on a population basis. The prefix y is used to denote stage after NAT. Currently, cancer registries of the American College of Surgeons' Commission on Cancer only partially collect y stage data, and data on the clinical response to NAT (yc or posttherapy clinical information) are not collected or recorded in a standardized fashion. In addition to NAT, nonoperative management after radiation and chemotherapy is being used with increasing frequency in rectal cancer and may be expanded to other treatment sites. Using examples from breast, rectal, and esophageal cancers, the pathological and imaging changes seen after NAT are reviewed to demonstrate appropriate staging.

Accuracy of patient race and ethnicity data in a central cancer registry.

PURPOSE: Race and Hispanic ethnicity data can be challenging for central cancer registries to collect. We evaluated the accuracy of the race and Hispanic ethnicity variables collected by the Utah Cancer Registry compared to self-report. METHODS: Participants were 3,162 cancer survivors who completed questionnaires administered in 2015-2022 by the Utah Cancer Registry. Each survey included separate questions collecting race and Hispanic ethnicity, respectively. Registry-collected race and Hispanic ethnicity were compared to self-reported values for the same individuals. We calculated sensitivity and specificity for each race category and Hispanic ethnicity separately. RESULTS: Survey participants included 323 (10.2%) survivors identifying as Hispanic, a lower proportion Hispanic than the 12.1% in the registry Hispanic variable (sensitivity 88.2%, specificity 96.5%). For race, 43 participants (1.4%) self-identified as American Indian or Alaska Native (AIAN), 32 (1.0%) as Asian, 23 (0.7%) as Black or African American, 16 (0.5%) Pacific Islander (PI), and 2994 (94.7%) as White. The registry race variable classified a smaller proportion of survivors as members of each of these race groups except White. Sensitivity for classification of race as AIAN was 9.3%, Asian 40.6%, Black 60.9%, PI 25.0%, and specificity for each of these groups was > 99%. Sensitivity and specificity for White were 98.8% and 47.4%. CONCLUSION: Cancer registry race and Hispanic ethnicity data often did not match the individual's self-identification. Of particular concern is the high proportion of AIAN individuals whose race is misclassified. Continued attention should be directed to the accurate capture of race and ethnicity data by hospitals.

Impact of socio-economic environment on incidence of primary liver cancer in France between 2006 and 2016.

BACKGROUND AND AIMS: To measure the impact of socio-economic environment on the incidence of hepatocellular carcinoma (HCC) and intrahepatic cholangiocarcinoma (iCCA). METHOD: The study used data from the French Network of Cancer Registries (FRANCIM) between 2006 and 2016. Classification of patients into HCC and iCCA was performed according to the topographical and morphological codes of the 3rd edition of the International Classification of Diseases for Oncology. Patient addresses were geolocalized and assigned to an IRIS, the smallest French geographic unit. Socio-economic environment was assessed by the European Deprivation Index (EDI). Sex- and age-standardized incidence rates with 95% confidence intervals (CI) were estimated per 100 000 inhabitants, by national quintiles, for each IRIS, sex and age group. Quintile 1 (Q1) characterized the most affluent areas. A Poisson regression was performed to model the impact of deprivation. RESULTS: We included 22 249 cases (79.64% HCC, 16.97% iCCA). Incidence rates were 11.46 and 2.39 per 100 000 person-years for HCC and iCCA, respectively. There was an over-incidence of HCC in quintiles 2, 3, 4 and 5 compared to quintile 1: Q1 10.28 [9.9-10.66] per 100 000 person-years, Q2 11.43 [10.48-12.47] (p < .0001), Q3 11.81 [10.82-12.89] (p < .0001), Q4 12.26 [11.25-13.37] (p < .001) and Q5 11.53 [10.57-12.57] (p < .0001). By contrast, there was no difference for iCCa. Deprivation was significantly associated with HCC in men (p = .0018) and women (p = .0009), but not with iCCA (p = .7407). CONCLUSION: The incidence of HCC is related to socio-economic environment, unlike iCCA. HCC and iCCA should be studied separately in epidemiological studies.

Barriers to early diagnosis and management of oral cancer in Latin America and the Caribbean.

OBJECTIVE: This study aimed to explore perceived barriers to early diagnosis and management of oral cancer, as well as potential pathways for improvement in Latin America and the Caribbean (LAC). METHODS: This cross-sectional study used a self-administered online questionnaire created via the Research Electronic Data Capture platform. The survey was distributed to health professionals trained in Oral Medicine, Oral Pathology, Oral and Maxillofacial Surgery, and Dentists with clinical and academic expertise in oral potentially malignant disorder (OPMD) and oral cancer. Data obtained were systematically organized and analyzed descriptively using Microsoft Excel. RESULTS: Twenty-three professionals from 21 LAC countries participated. Major barriers included the limited implementation of OPMD and oral cancer control plans (17.4%), low compulsory reporting for OPMD (8.7%) and oral cancer (34.8%), unclear referral pathways for OPMD (34.8%) and oral cancer (43.5%), and a shortage of trained professionals (8.7%). Participants endorsed the utility of online education (100%) and telemedicine (91.3%). CONCLUSION: The survey highlights major perceived barriers to early diagnosis and management of OPMD and oral cancer in LAC, as well as potential avenues for improvement.

Collecting routine and timely cancer stage at diagnosis by implementing a cancer staging tiered framework: the Western Australian Cancer Registry experience.

BACKGROUND: Current processes collecting cancer stage data in population-based cancer registries (PBCRs) lack standardisation, resulting in difficulty utilising diverse data sources and incomplete, low-quality data. Implementing a cancer staging tiered framework aims to improve stage collection and facilitate inter-PBCR benchmarking. OBJECTIVE: Demonstrate the application of a cancer staging tiered framework in the Western Australian Cancer Staging Project to establish a standardised method for collecting cancer stage at diagnosis data in PBCRs. METHODS: The tiered framework, developed in collaboration with a Project Advisory Group and applied to breast, colorectal, and melanoma cancers, provides business rules - procedures for stage collection. Tier 1 represents the highest staging level, involving complete American Joint Committee on Cancer (AJCC) tumour-node-metastasis (TNM) data collection and other critical staging information. Tier 2 (registry-derived stage) relies on supplementary data, including hospital admission data, to make assumptions based on data availability. Tier 3 (pathology stage) solely uses pathology reports. FINDINGS: The tiered framework promotes flexible utilisation of staging data, recognising various levels of data completeness. Tier 1 is suitable for all purposes, including clinical and epidemiological applications. Tiers 2 and 3 are recommended for epidemiological analysis alone. Lower tiers provide valuable insights into disease patterns, risk factors, and overall disease burden for public health planning and policy decisions. Capture of staging at each tier depends on data availability, with potential shifts to higher tiers as new data sources are acquired. CONCLUSIONS: The tiered framework offers a dynamic approach for PBCRs to record stage at diagnosis, promoting consistency in population-level staging data and enabling practical use for benchmarking across jurisdictions, public health planning, policy development, epidemiological analyses, and assessing cancer outcomes. Evolution with staging classifications and data variable changes will futureproof the tiered framework. Its adaptability fosters continuous refinement of data collection processes and encourages improvements in data quality.

Evaluating the Educational Value of Cancer Registries - a Systematic Review and Thematic Analysis.

Cancer registries encompass a broad array of functions that underpin cancer control efforts. Despite education being fundamental to improving patient outcomes, little is known regarding the educational value of cancer registries. This review will evaluate the educational value of cancer registries for key stakeholders as reported within published literature and identify opportunities for enhancing their educational value. Four databases (Ovid Medline, Embase, CINAHL and Web of Science) were searched using a predefined search strategy in keeping with the PRISMA statement. Data was extracted and synthesised in narrative format. Themes and frequency of discussion of educational content were explored using thematic content analysis. From 952 titles, ten eligible studies were identified, highlighting six stakeholder groups. Educational outcomes were identified relating to clinicians (6/10), researchers (5/10), patients (4/10), public health organisations (3/10), medical students (1/10) and the public (1/10). Cancer registries were found to educationally benefit key stakeholders despite educational value not being a key focus of any study. Deliberate efforts to harness the educational value of cancer registries should be considered to enable data-driven quality improvement, with the vast amount of data promising ample educational benefit.

[Cancer figures in Italy: an overview]. / Panoramica sui numeri del cancro in Italia.

BACKGROUND: the description of the geographical distribution and temporal trends of cancer is relevant for prevention and improving the quality of care. This is primarily achieved through the incidence measures derived from population cancer registries (CRs). In recent years, in Italy there has been a prevalence of 'real-time' estimates and projections, although based on rather dated data. Given the significant increase in registration activity and still in absence of a national cancer registry network, the recent publication of Volume 12 of Cancer Incidence in Five Continents (CI5) provides a valuable opportunity to update cancer incidence estimates in Italy and to provide national and macroarea reference estimates. OBJECTIVES: to explore the pattern of cancer in Italy by reviewing and reorganizing the most recent data from cancer registries. MATERIALS AND METHODS: data from Italian cancer registries included in CI5 for the years 2013-2017 were obtained. Populations were verified, corrected for errors, and normalized to Italian National census reconstruction. The completeness of CR data was assessed using the mortality/incidence ratio applied to potential outlier data. Age-specific rates, Age standardized rates (ASRs), and truncated rates for adults (35-64 years) were calculated for 79 different neoplasms. Analyses were performed for individual CRs and macroareas. Temporal comparisons were made for 23 CRs with data from 2008-2012. RESULTS: the observed incidence rates show extreme heterogeneity. Among males, the overall ASR ranges from 584 per 100,000 in the province of Reggio Calabria to 809.9 per 100,000 in the province of Sondrio. Among women, ASR is highest in Emilia-Romagna (540.5) and lowest in the province of Avellino (409.9). The gradient with decreasing rates from North to South is clearly visible only for female breast cancer. Higher rates of lung cancer are observed for the city of Naples in both genders. In adult males (35-64 years), ASRs of lung cancer are maximum in the provinces of Caserta and Naples, where they are more than double the ASRs observed in the Veneto Region. In general, a significant decline in male ASRs is observed in Northern Italy compared to the previous five-year period. A significant part of this trend is influenced by lung cancer that is significantly decreasing throughout the Centre-North among men and substantially increasing among women. The database and tables with details of all calculated indicators are provided as supplementary material. CONCLUSIONS: the analysis has shown the importance of a review of real CR data and, in general, working with real data to not only develop specific estimates of cancers in Italy, but also to share reference rates and basic data for further analysis. The present review has also revealed critical issues with data submitted to the IARC. The comparison and verification of data quality through control and audit processes must represent a concrete operational perspective of the national cancer registry network. From the perspective of cancer epidemiology, important indications emerge regarding the distribution of cancers that can fuel aetiological research, as well as the planning of prevention and care activities. The data also show that it is advisable to separate the provinces of Caserta and Naples from the South in estimation and projection models. The comparison and verification of data quality through control and audit processes must represent a concrete operational perspective of the national cancer registry network.

Age-related differences in cancer relative survival in the United States: A SEER-18 analysis.

Cancer survival has improved since the 1990s, but to different extents across age groups, with a disadvantage for older adults. We aimed to quantify age-related differences in relative survival (RS-1-year and 1-year conditioning on surviving 1 year) for 10 common cancer types by stage at diagnosis. We used data from 18 United States Surveillance Epidemiology and End Results cancer registries and included cancers diagnosed in 2012 to 2016 followed until December 31, 2017. We estimated absolute differences in RS between the 50 to 64 age group and the 75 to 84 age group. The smallest differences were observed for prostate and breast cancers (1.8%-points [95% confidence interval (CI): 1.5-2.1] and 1.9%-points [95% CI: 1.5-2.3], respectively). The largest was for ovarian cancer (27%-points, 95% CI: 24-29). For other cancers, differences ranged between 7 (95% CI: 5-9, esophagus) and 18%-points (95% CI: 17-19, pancreas). Except for pancreatic cancer, cancer type and stage combinations with very high (>95%) or very low (<40%) 1-year RS tended to have smaller age-related differences in survival than those with mid-range prognoses. Age-related differences in 1-year survival conditioning on having survived 1-year were small for most cancer and stage combinations. The broad variation in survival differences by age across cancer types and stages, especially in the first year, age-related differences in survival are likely influenced by amenability to treatment. Future work to measure the extent of age-related differences that are avoidable, and identify how to narrow the survival gap, may have most benefit by prioritizing cancers with relatively large age-related differences in survival (eg, stomach, esophagus, liver and pancreas).

Selection bias due to delayed comprehensive genomic profiling in Japan.

Patients with advanced cancer undergo comprehensive genomic profiling in Japan only after treatment options have been exhausted. Patients with a very poor prognosis were not able to undergo profiling tests, resulting in a selection bias called length bias, which makes accurate survival analysis impossible. The actual impact of length bias on the overall survival of patients who have undergone profiling tests is unclear, yet appropriate methods for adjusting for length bias have not been developed. To assess the length bias in overall survival, we established a simulation-based model for length bias adjustment. This study utilized clinicogenomic data of 8813 patients with advanced cancer who underwent profiling tests at hospitals throughout Japan between June 2019 and April 2022. Length bias was estimated by the conditional Kendall τ statistics and was significantly positive for 13 of the 15 cancer subtypes, suggesting a worse prognosis for patients who underwent profiling tests in early timing. The median overall survival time in colorectal, breast, and pancreatic cancer from the initial survival-prolonging chemotherapy with adjustment for length bias was 937 (886-991), 1225 (1152-1368), and 585 (553-617) days, respectively (median; 95% credible interval). Adjusting for length bias made it possible to analyze the prognostic relevance of oncogenic mutations and treatments. In total, 12 tumor-specific oncogenic mutations correlating with poor survival were detected after adjustment. There was no difference in survival between FOLFIRINOX (leucovorin, fluorouracil, irinotecan, and oxaliplatin) or gemcitabine with nab-paclitaxel-treated groups as first-line chemotherapy for pancreatic cancer. Adjusting for length bias is an essential part of utilizing real-world clinicogenomic data.

Changes in the survival of patients with breast cancer: Poland, 2000-2019.

PURPOSE: The main aim of this study was to estimate breast cancer survival in Poland over the period from 2000 to 2019 in both sexes. METHODS: Data were obtained from the Polish National Cancer Registry. The presented metrics included age-standardized 5- and 10-year net survival (NS), median survival times, years of life lost (YLLs), and standardized mortality ratios (SMRs). RESULTS: Between 2000 and 2019, 315,278 patients (2353 men and 312,925 women; male-to-female ratio 1/100) were diagnosed with breast cancer in Poland. In this period, 721,987 YLLs were linked to breast cancer. Women presented a higher 5- and 10-year age-standardized NS than men (5-year NS: 77.33% for women and 65.47% for men, P < 0.001, common language effect size (CL) 1.00; 10-year NS: 68.75% for women and 49.50% for men, P < 0.001, CL 1.00). Between the earliest and latest studied period, namely 2000-2004 and 2015-2019, there was a statistically significant increase only in female survival (+ 7.32 pp, P < 0.001, CL 1.00). SMRs were significantly higher for women than for men (3.35 vs. 2.89, respectively). CONCLUSION: Over the last two decades, breast cancer survival in Poland has improved significantly. Nonetheless, special attention should be given to the disparities between sexes and the gap in overall improvement of survival rates compared with other European countries.

Cancer survivorship experiences in Utah: an evaluation assessing indicators of survivors' quality of life, health behaviors, and access to health services.

PURPOSE: The 2016-2020 Utah Comprehensive Cancer Prevention and Control Plan prioritized strategies to address cancer survivorship experiences. In this paper we present estimates for nine indicators evaluating these priorities, trends over time, and assess disparities in survivorship experiences across demographic subgroups. METHODS: We surveyed a representative sample of Utah cancer survivors diagnosed between 2012 and 2019 with any reportable cancer diagnosis. We calculated weighted percentages and 95% confidence intervals (CI) for each indicator. We assessed change over time using a test for trend across survey years in a logistic regression model and used Rao-Scott F-adjusted chi-square tests to test the association between demographic characteristics and each survivorship indicator. RESULTS: Most of the 1,793 respondents (93.5%) reported their pain was under control, 85.7% rated their overall health as good, very good, or excellent, but 46.5% experienced physical, mental, or emotional limitations. Only 1.7% of survivors aged 75 or older were current smokers, compared to 5.8% of 65-74-year-olds and 7.9% of survivors aged 55-74 (p < 0.006). No regular physical activity was reported by 20.6% and varied by survivor age and education level. The proportion who received a survivorship care plan increased from 34.6% in 2018 to 43.0% in 2021 (p = 0.025). However, survivors under age 55 were significantly less likely to receive a care plan than older survivors. CONCLUSION: This representative survey of cancer survivors fills a gap in understanding of the cancer survivorship experience in Utah. Results can be used to evaluate and plan additional interventions to improve survivorship quality of life.

Registry-derived stage (RD-Stage) for capturing cancer stage at diagnosis for endometrial cancer.

BACKGROUND: Capture of cancer stage at diagnosis is important yet poorly reported by health services to population-based cancer registries. In this paper we describe current completeness of stage information for endometrial cancer available in Australian cancer registries; and develop and validate a set of rules to enable cancer registry medical coders to calculate stage using data available to them (registry-derived stage or 'RD-Stage'). METHODOLOGY: Rules for deriving RD-stage (Endometrial carcinoma) were developed using the American Joint Commission on Cancer (AJCC) TNM (tumour, nodes, metastasis) Staging System (8th Edition). An expert working group comprising cancer specialists responsible for delivering cancer care, epidemiologists and medical coders reviewed and endorsed the rules. Baseline completeness of data fields required to calculate RD-Stage, and calculation of the proportion of cases for whom an RD stage could be assigned, was assessed across each Australian jurisdiction. RD-Stage (Endometrial cancer) was calculated by Victorian Cancer Registry (VCR) medical coders and compared with clinical stage recorded by the patient's treating clinician and captured in the National Gynae-Oncology Registry (NGOR). RESULTS: The necessary data completeness level for calculating RD-Stage (Endometrial carcinoma) across various Australian jurisdictions varied from 0 to 89%. Three jurisdictions captured degree of spread of cancer, rendering RD-Stage unable to be calculated. RD-Stage (Endometrial carcinoma) could not be derived for 64/485 (13%) cases and was not captured for 44/485 (9%) cases in NGOR. At stage category level (I, II, III, IV), there was concordance between RD-Stage and NGOR captured stage in 393/410 (96%) of cases (95.8%, Kendall's coefficient = 0.95). CONCLUSION: A lack of consistency in data captured by, and data sources reporting to, population-based cancer registries meant that it was not possible to provide national endometrial carcinoma stage data at diagnosis. In a sample of Victorian cases, where surgical pathology was available, there was very good concordance between RD-Stage (Endometrial carcinoma) and clinician-recorded stage data available from NGOR. RD-Stage offers promise in capturing endometrial cancer stage at diagnosis for population epidemiological purposes when it is not provided by health services, but requires more extensive validation.

Do investments in cancer registry databases and tools bring added value? NORDCAN as an example.

BACKGROUND: In the 1990s, the large-scale collaboration Kreftbildet i Norden (KIN) drew attention to the need for timely cancer statistics for cancer control planning in the Nordic countries. Supported by the Nordic Cancer Union (NCU), a web-based version of NORDCAN was continually developed by the Association of Nordic Cancer Registries (ANCR) from 2003, with website support and hosting by the International Agency for Research on Cancer (IARC). Despite empirical evidence of its global reach, the question of whether recurrent investment in NORDCAN brings added value was raised; we sought to formally assess this. METHODS: Scientific value was determined by extracting publications citing NORDCAN from PubMed. We compared the funds allocated to the KIN project and later Nordic studies on cancer predictions and survival, with those allocated to NORDCAN. RESULTS: 96 publications in 43 journals were retrieved. Two publication peaks, in 2010 and in 2016 relate to Nordic cancer survival and Danish age care projects, respectively. Papers citing NORDCAN increased substantially from 4 published in 2017 to the 24 papers in 2022. The integration of survival and prediction projects into NORDCAN reduced the costs of investment to one-quarter of the those required in earlier years, in real terms. DISCUSSION: User statistics and scientific output clearly points to NORDCAN bringing added value given resources expended, even with the additional costs imposed to ensure GDPR compliance. Research funding indicates that the databases and interactive tools are critical as both research and education resources. Nonetheless, a sustainable funding model is needed if NORDCAN is to continue to fulfill its utility in cancer control, health care planning and cancer research.

Global patterns of non-Hodgkin lymphoma in 2020.

We evaluated the global patterns of non-Hodgkin lymphoma (NHL) in 2020 using the estimates of NHL incidence and mortality in 185 countries that are part of the GLOBOCAN 2020 database, developed by the International Agency for Research on Cancer (IARC). As well as new cases and deaths of NHL, corresponding age-standardized (world) rates (ASR) of incidence and mortality per 100 000 person-years were derived by country and world region. In 2020, an estimated 544 000 new cases of NHL were diagnosed worldwide, and approximately 260 000 people died from the disease. Eastern Asia accounted for a quarter (24.9%) of all cases, followed by Northern America (15.1%) and South-Central Asia (9.7%). Incidence rates were higher in men than in women, with similar geographical patterns. While the incidence rates were highest in Australia and New Zealand, Northern America, Northern Europe and Western Europe (>10/100 000 for both sexes combined), the highest mortality rates (>3/100 000) were found in regions in Africa, Western Asia and Oceania. The large variations and the disproportionately higher mortality in low- and middle-income countries can be related to the underlying prevalence and distribution of risk factors, and to the level of access to diagnostic and treatment facilities.

National surveillance of cancer survival in Iran (IRANCANSURV): Analysis of data of 15 cancer sites from nine population-based cancer registries.

Cancer survival is a key indicator for the national cancer control programs. However, survival data in the East Mediterranean region (EMR) are limited. We designed a national cancer survival study based on population-based cancer registries (PBCRs) from nine provinces in Iran. The current study reports 5-year net survival of 15 cancers in Iranian adults (15-99 years) during 2014 to 2015 in nine provinces of Iran. We used data linkages between the cancer registries and the causes of death registry and vital statistics and active follow-up approaches to ascertain the vital status of the patients. Five-year net survival was estimated through the relative survival analysis. We applied the international cancer survival standard weights for age standardization. Five-year survival was highest for prostate cancer (74.9%, 95% CI 73.0, 76.8), followed by breast (74.4%, 95% CI 72.50, 76.3), bladder (70.4%, 95% CI 69.0, 71.8) and cervix (65.2%, 95% CI 60.5, 69.6). Survival was below 25% for cancers of the pancreas, lung, liver, stomach and esophagus. Iranian cancer patients experience a relatively poor prognosis as compared to those in high-income countries. Implementation of early detection programs and improving the quality of care are required to improve the cancer survival among Iranian patients. Further studies are needed to monitor the outcomes of cancer patients in Iran and other EMR countries.

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.

Overall and net survival of patients with sarcoma between 2005 and 2010: Results from the French Network of Cancer Registries (FRANCIM).

BACKGROUND: Sarcomas are rare, heterogeneous, ubiquitously localized malignancies with many histologic subtypes and genomic patterns. The survival of patients with sarcoma has rarely been described based on this heterogeneity; therefore, the authors' objective was to estimate survival outcomes in patients who had sarcomas using the 2020 version of the World Health Organization classification of soft tissue and bone tumors. METHODS: Patients older than 15 years who had incident sarcoma diagnosed between 2005 and 2010 were extracted from 14 French population-based cancer registries covering 18% of the French metropolitan population. Vital status for each patient was actively followed up to June 30, 2013. Net survival (NS) was estimated using the unbiased Pohar-Perme method. RESULTS: Overall, 4202 patients were included. NS declined with increasing age at diagnosis. According to topographic groups, large 5-year NS disparities were observed, ranging from 47% among women with gynecologic sarcomas to 89% among patients with skin sarcomas. Patients with soft tissue, bone, and gastrointestinal sarcomas had 5-year NS rates of 53%, 61%, and 70%, respectively. Similar heterogeneity was observed according to histologic subtypes, with 5-year NS ranging from 19% for patients with angiosarcomas to 96% for patients with dermatofibrosarcomas. Patients with sarcoma who displayed missense mutations had a better 5-year NS (74%); those with MDM2-amplified sarcomas had the worst NS (45%). CONCLUSIONS: NS rates in patients with sarcoma are presented here for the first time based on the 2020 World Health Organization classification applied to population-based registry data. Large prognostic heterogeneity was observed based on age, topographic and histologic groups, and genomic alteration profiles, constituting a benchmark for future studies and clinical trials.

Global burden of primary liver cancer in 2020 and predictions to 2040.

BACKGROUND & AIMS: The burden of liver cancer varies across the world. Herein, we present updated estimates of the current global burden of liver cancer (incidence and mortality) and provide predictions of the number of cases/deaths to 2040. METHODS: We extracted data on primary liver cancer cases and deaths from the GLOBOCAN 2020 database, which includes 185 countries. Age-standardised incidence and mortality rates (ASRs) per 100,000 person-years were calculated. Cases and deaths up to the year 2040 were predicted based on incidence and mortality rates for 2020 and global demographic projections to 2040. RESULTS: In 2020, an estimated 905,700 people were diagnosed with, and 830,200 people died from, liver cancer globally. Global ASRs for liver cancer were 9.5 and 8.7 for new cases and deaths, respectively, per 100,000 people and were highest in Eastern Asia (17.8 new cases, 16.1 deaths), Northern Africa (15.2 new cases, 14.5 deaths), and South-Eastern Asia (13.7 new cases, 13.2 deaths). Liver cancer was among the top three causes of cancer death in 46 countries and was among the top five causes of cancer death in 90 countries. ASRs of both incidence and mortality were higher among males than females in all world regions (male:female ASR ratio ranged between 1.2-3.6). The number of new cases of liver cancer per year is predicted to increase by 55.0% between 2020 and 2040, with a possible 1.4 million people diagnosed in 2040. A predicted 1.3 million people could die from liver cancer in 2040 (56.4% more than in 2020). CONCLUSIONS: Liver cancer is a major cause of death in many countries, and the number of people diagnosed with liver cancer is predicted to rise. Efforts to reduce the incidence of preventable liver cancer should be prioritised. LAY SUMMARY: The burden of liver cancer varies across the world. Liver cancer was among the top three causes of cancer death in 46 countries and was among the top five causes of cancer death in 90 countries worldwide. We predict the number of cases and deaths will rise over the next 20 years as the world population grows. Primary liver cancer due to some causes is preventable if control efforts are prioritised and the predicted rise in cases may increase the need for resources to manage care of patients with liver cancer.

Risk of clear-cell adenocarcinoma of the vagina and cervix among US women with potential exposure to diethylstilbestrol in utero.

PURPOSE: Women exposed to diethylstilbestrol (DES) in utero were at elevated risk of clear-cell adenocarcinoma of the vagina and cervix (CCA) as young women. Previous research suggested that this elevated risk of CCA may persist into adulthood. We extended a published analysis to measure CCA risk as these women aged. METHODS: Standardized incidence ratios (SIR) compared CCA risk among women born from 1947 through 1971 (the DES-era) to CCA risk among the comparison group of women born prior to 1947, using registry data that covered the US population. RESULTS: Incidence rates of CCA among both cohorts increased with age. Among the DES-era birth cohort, higher rates of CCA were observed across all age groups except 55-59 years. SIR estimates had wide confidence intervals that often included the null value. CONCLUSIONS: Results are consistent with prior research and suggest an elevated risk of CCA in midlife and at older ages among women exposed in utero to DES. These results highlight unresolved issues regarding cancer risk among aging DES daughters and appropriate screening guidance. The examination of population-based cancer surveillance data may be a useful tool for monitoring trends in the incidence of other rare cancers over time among specific birth cohorts.