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Rare cancers collectively account for a significant proportion of the overall cancer burden in Japan. We aimed to describe and examine the incidence of each rare cancer and the temporal changes using the internationally agreed rare cancer classification. Cancer cases registered in regional population‐based cancer registries from 2011 to 2015 and the National Cancer Registry (NCR) from 2016 to 2018 were classified into 18 families, 68 Tier‐1 cancer groupings, and 216 single cancer entities based on the RARECAREnet list. Crude incidence rates and age‐standardized incidence rates (ASR) were calculated for Tier‐1 and Tier‐2 cancers. The annual percent change and the 95% and 99% confidence limits for annual ASR for each of the 68 Tier‐1 cancers were estimated using the log‐linear regression of the weighted least squares method. The differences in ASRs between 2011 and 2018 were evaluated as an absolute change. A total of 5,640,879 cases were classified into Tier‐1 and Tier‐2 cancers. The ASRs of 18 out of 52 Tier‐1 cancers in the rare cancer families increased, whereas the ASR for epithelial tumors of gallbladder decreased. The ASRs of 6 out of the 16 Tier‐1 cancers in the common cancer families increased, whereas those of epithelial tumors of stomach and liver decreased. There was no significant change in the incidence of the other 40 Tier‐1 cancers. The incidence of several cancers increased due to the dissemination of diagnostic concepts, improved diagnostic techniques, changes in coding practice, and the initiation of the NCR. Time trend of age‐standardized incidence rates of rare cancer families and common cancer families in Japan from 2011 to 2018.

Purpose To describe our experience upon developing and implementing a hospital-based cancer registry (HBCR) in a quaternary-level of care private non-profit academic medical center in Cali, Colombia. Methods HBCRs capture, in a given institution, every single patient with a confirmed malignancy. In this study, all cases evaluated between 2014 and 2018 were included in the HBCR. In compliance with the International Agency for Research on Cancer recommendations, cases were classified as analytic or non-analytic. Data derived from an exhaustive selection of patients was stored in a computing platform owned by the institution, meeting the 2016 Facility Oncology Registry Data Standards recommendations. Quality control was performed by evaluating comparability, timeliness, validity, and completeness . Results A total of 24,405 new cases were registered between 2014 and 2018, from which 4253 (17.4%) died. Among all cases, based on the anatomic location, most common malignancies were breast ( n  = 1554), thyroid ( n  = 1346), hematolymphoid ( n  = 1251), prostatic ( n  = 805), and colorectal ( n  = 624). The behavior of the new cases was consistent with an incremental trend. Conclusion Upon implementing the HBCR, major challenges were identified (i.e., a precise definition of cases, the development of processes for capturing new cases, a standardized data collection strategy, and carrying-out an appropriate patient follow-up). Based on our experience, the success of an HBCR largely relies on the interest from the institution, the engagement of stakeholders and financial support, that is, it depends on the adequate access over time to funding, technological, and staffing resources.

Background To identify the prognosis of Japanese patients with collecting duct carcinoma (CDC). Methods We used a hospital-based cancer registry data in Japan to extract CDC cases that were diagnosed in 2013, histologically confirmed, and determined the first course of treatment. We further investigated treatment modalities and estimated overall survival (OS) by the Kaplan–Meier method. Results A total of 61 CDC patients were identified. The 5-year OS rate for all CDC patients who were diagnosed in Japan during 2013 was 23.6% (95% CI: 15.0–37.4), with a median OS of 14 months (95% CI: 12–24). The 5-year OS rate for CDC patients at stages I, III, and IV were 53.0% (95% CI: 29.9–94.0), 35.7% (95% CI: 19.8–64.4), and 3.4% (95% CI: 0.5–23.7), respectively. Noteworthy, the 1-year OS for stage IV patients was 27.6% (95% CI: 0.5–23.7) and the median OS was only 5 months (95% CI: 4–12). We further examined the OS for advanced disease according to treatment modalities. The median OS of patients who undertook chemotherapy alone was significantly shorter than patients who undertook surgery alone for advanced disease (4 months [95% CI: 4-NA] vs. 15 months [95% CI: 13–68]; p  < 0.001) and surgery-only patients had a similar median OS as surgery-plus-chemotherapy patients (19 months [95% CI: 13-NA]; p  < 0.001). Moreover, a multivariable analysis for the OS in advanced disease revealed that surgery-plus-chemotherapy patients had significantly more favorable prognoses (HR 0.21, 95% CI: 0.07–0.57). Conclusions Japanese CDC patients face poor prognoses similar to Western countries, especially in advanced cases that receive only chemotherapy. Surgery appears necessary for advanced disease.

In this retrospective study, we aimed to clarify the risk of developing a second primary cancer and to determine the periods of high risk of second primary cancers. Subjects were all patients who had been diagnosed with a first primary cancer and registered with the Nagasaki Prefecture Cancer Registry between 1985 and 2007. We calculated the standardized incidence ratio (SIR) of second primary cancer according to site and years after diagnosis of the first primary cancer. A second primary cancer developed in 14 167 of 174 477 subjects (8.1%) during a median follow‐up of 1.8 years. The SIR of all cancer was 1.10 (95% confidence interval, 1.08–1.11). Some specific relationships were observed between sites with risk factors in common, such as smoking, drinking, and hormone status. The SIRs were relatively high after approximately 10 years for all sites, and trends differ among cancer sites. We showed that cancer patients are at higher risk of a second primary cancer than the general population. In respect of the risk of a second primary cancer, physicians should be alert for cancers that have risk factors in common with the first primary cancer. We examined the risk of developing a second primary cancer and the optimal duration of follow‐up for cancer patients in regard to multiple primary cancers. The results showed that medical scrutiny for second primary cancers that have risk factors in common with the first primary cancer is important, and follow‐up for 10 years for some sites is needed.

ObjectiveEpidemiological data on synchronous and metachronous lung metastases from colorectal cancer are scarce. The aim of this study was to determine trends in the incidence, treatment and survival in colorectal cancer with lung metastases in the general population.Design and patientsAll cases of lung metastases from colorectal cancer registered in the Burgundy digestive cancer registry between 1976 and 2005 were included. Trends in the incidence of synchronous colorectal cancer lung metastases were estimated. A Cox model was used to analyse the risk of developing a metachronous metastasis. Multivariate analyses were performed using a relative survival model with proportional hazard applied to the net survival by interval.ResultsOverall, 11.0% of patients had synchronous lung metastases. The frequency of synchronous lung metastases significantly increased for both sexes over time, with a nearly threefold increase between the periods 1976–1985 and 1996–2005. The overall 5-year cumulative risk of developing metachronous lung metastases was 5.8%. It did not significantly vary with time. Compared to colon cancer, rectal cancers had a higher risk of developing synchronous (OR: 2.80 (1.65–4.76)) and metachronous (OR: 2.63 (1.69–4.08)) lung metastases. Overall, 4.1% of synchronous lung metastases and 14.3% of metachronous lung metastases were resected for cure. The 3-year relative survival was 11.3% for synchronous lung metastases and 13.8% for metachronous lung metastases. It was, respectively, 53.0% and 59.2% after resection for cure. In multivariate analysis, the relative risk of death for the 1996–2005 period was about one fifth of that for the 1976–1985 period.ConclusionsThe incidence of synchronous lung metastases increased over time, whereas the incidence of metachronous lung metastases remained stable. Lung metastases were more frequent in rectal cancer than in colon cancer. Unless surgical resection is possible, the prognosis for lung metastases remains very poor.

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.

Background Advanced cancer stage at diagnosis may explain high cancer mortality among patients with a severe psychiatric illness (SPI). Studies to date investigating advanced stage cancer at diagnosis as a potential explanation for high cancer mortality in individuals with a history of mental illness have been inconclusive. We examined the relationship between a SPI history and unknown cancer stage at diagnosis in colorectal cancer (CRC) patients. Methods This was a population-based, cross-sectional study using linked administrative databases of CRC patients diagnosed between 01/04/2007 and 31/12/2012. Individuals who had a history of mental illness but did not meet the definition of a SPI were excluded. An SPI was measured in the 5 years prior to the cancer diagnosis and categorized as inpatient, outpatient or no SPI. Individuals with a best stage in Stage 0 to Stage IV were considered staged and absence of staging information was defined as unknown stage. The risk of unknown stage cancer was estimated using modified Poisson regression. Results The final study cohort included 24,507 CRC patients. 258 (1.1%) individuals experienced a history of inpatient SPI and 482 (2.0%) experienced outpatient SPI. After adjusting for confounders, CRC patients with an inpatient or outpatient history of SPI were at greater risk of having missing TNM stage at diagnosis, compared to patients with no history of a mental illness (RR 1.45 (95% CI: 1.14–1.85) and RR1.17 (95% CI 0.95–1.43), respectively). The results did not change when alternate practices to assign SPI history using administrative data were used. Conclusions Individuals with an SPI, especially those with a psychiatric admission, were more likely to have missing stage data compared to individuals without a history of a mental illness. Incomplete and low quality cancer staging data likely undermines the quality of cancer care following initial diagnosis. Understanding why patients with an SPI are missing this information is a critical first step to providing excellent care to this vulnerable population.

Background/Objectives: In Europe, over 80% of children diagnosed with cancer survive at least 5 years. To improve cancer monitoring, the Paediatric Population-Based Cancer Registry (PCRM) was established in the Community of Madrid. This study aimed to describe population-based 1-, 3- and 5-year survival for children and adolescents diagnosed with cancer, by sex, age, tumour type and stage at diagnosis. Methods: Data were extracted from the PCRM, which reviews all cases identified through integrated primary care, hospital discharge, and mortality data, using electronic medical records. Patients aged 0–19 diagnosed with primary malignant cancer between 2015 and 2018 were included, with follow-up for vital status through October 2024. Stage was classified using the 2014 Toronto Childhood Cancer Staging Guidelines (tier 2). Kaplan–Meier methods were used to estimate survival, and log-rank tests assessed group differences. Cox regression was used to quantify the effect of localized vs. advanced disease. Results: The analysis included 862 patients. Most frequent cancers were leukaemia (24.1%), lymphomas (22.2%) and central nervous system (CNS) tumours (12.6%). Stage was assigned to 88.4% tumours. Overall survival was 93.6% in 1 year and 85.9% in 5 years. Five-year survival was 83.7% for leukaemia, 97.4% for lymphomas, 66.1% for CNS tumours; 85.8% in boys vs. 85.9% in girls (p = 0.908); 85.2% in children aged 0–14 years vs. 87.8% in adolescents aged 15–19 years (p = 0.314); and 69.9% for advanced vs. 89.7% for early-stage (p < 0.001), with a 3.3-fold higher mortality risk. Conclusions: This population-based study offers promising survival estimates reaching 86% globally at 5 years while revealing differences by cancer type and stage. It also highlights the Toronto Guidelines as a valuable tool for standardizing cancer registry methods and providing useful epidemiological indicators.

Background Lung and small cell neuroendocrine carcinomas (SCCs) are the most common sites and histological types of high‐grade neuroendocrine carcinoma (NEC). Comprehensive epidemiological information on NECs is limited. We used the Taiwan Cancer Registry database to analyze the nationwide epidemiology and clinical outcomes of NECs in Taiwan. Methods We used morphology codes from the International Classification of Diseases for Oncology, third edition (ICD‐O‐3) and ICD codes to identify the histologic type and sites of NECs, respectively. The Kaplan–Meier method was used to estimate the overall survival (OS) of NECs. The risk of NEC death was evaluated using Cox proportional hazards regression analysis. Results The incidence of NECs in Taiwan was 3.892 per 100,000 in 2006 and increased to 4.039 per 100,000 in 2021, with the predominant site being the lung and bronchus and the histologic type of SCC. The median OS of all NECs was 8.3 months. Female sex, earlier stage, and later diagnosis (2016–2021) were good prognostic factors for the OS of NECs, whereas the histologic type of SCC and large cell neuroendocrine carcinoma, primary sites of the lung and bronchus, esophagus, and unknown primary sites were poor prognostic factors for the OS of NECs. Surgery combined with chemotherapy and/or radiation therapy resulted in longer survival for stage III/IV NECs. Conclusions Differences in the incidence trends and clinical outcomes of NECs suggest different etiologies and heterogeneities of NECs. Further investigations on risk factor identification and novel treatment strategies for NECs are warranted. Differences in the incidence trends and clinical outcomes of NECs suggest different etiologies and heterogeneities of NECs. Further investigations on risk factor identification and novel treatment strategies for NECs are warranted.

This article presents the current status of the implementation of clinical cancer registration across all German federal states that started in 2013 and that is basis for setting up comprehensive clinical and population-based cancer registries (CRs). A nationwide definition of relevant cancers, a common model of passive registration, a standard basic set of data items as well as a sustainable funding are prerequisites for a standardized collection of cancer data in Germany. For the collected information, the tools and methods used for data collection and processing, for statistical analyses and reporting, the potential synergies of a comprehensive CR implementing the tasks of both a clinical CR and a population-based CR become evident. Many different tasks of clinical and populationbased CRs have already been implemented in Germany. This includes usage of individual patient data for quality assurance and the certification of cancer centers or comparative analyses on the adherence to guideline recommendations. CRs further provided unselected data on the cancer burden in the underlying populations and actively contribute in a variety of ways to many collaborative research projects on cancer etiology, the effectiveness of screening programs or cancer care, or provide patient or outcome data for clinical or population-based studies. Although many tasks of clinical and population-based CRs have already been implemented, a number of great efforts still lay ahead. Major challenges include the harmonization of data collection, the development of required standards and methods for data processing and usage, but first and foremost, the collection of complete and valid data for the different tasks of comprehensive CRs.