On the Fidelity-Privacy Tradeoff of Synthetic Cancer Registry Data.

The sharing of personal health data is highly regulated due to privacy and security concerns. An alternative to sharing personal data is to share synthetic data, because ideally it should be impossible to reconstruct real personal data from synthetic data, which is called privacy. At the same time, the structure of the synthetic data should be as similar as possible to the structure of the real data to ensure that conclusions drawn from the synthetic data are also valid for the real data, which is called fidelity. Typically, there is a tradeoff between fidelity and privacy for synthetic health data. We study the fidelity and privacy of cancer data synthesized using generative machine learning approaches. To generate synthetic cancer data, we use variational autoencoders (VAEs), generative adversarial networks (GANs), and denoising diffusion probabilistic models (DDPMs). The tabular cancer registry data studied have nine categorical variables from breast cancer patients. We find that DDPMs generate synthetic cancer data with higher fidelity; that is, the structure of the synthetic data is more similar to the real cancer data than the data generated by VAEs and GANs. At the same time, synthetic cancer data from DDPMs pose a greater privacy risk because the data are more likely to reveal information from real patients than synthetic data from VAEs and GANs.

Effect of Age at Diagnosis on the Prognosis of Gastric Cancer Patients: A Population-Based Study in Georgia.

INTRODUCTION: The national burden of gastric cancer (GC) is high in Georgia, which is determined by its high mortality and low survival. The study aimed to estimate the effect of age at diagnosis on the prognosis of GC patients diagnosed between 2015 and 2020 in Georgia. MATERIALS AND METHODS: We obtained data for the study from the national population-based cancer registry. All patients 15 years of age or older, diagnosed during 2015-2020 with invasive GC (site codes C16.0 to C16.9, International Classification of Diseases for Oncology), were eligible for inclusion in the analysis. We produced survival curves using the Kaplan-Meier method, and the log-rank test was used to compare survival between groups. Hazard ratios (HR) were estimated using univariate Cox proportional models and multivariate Cox proportional hazard models. The endpoint of the study was overall survival (OS). The level of statistical significance of the study findings was estimated using p-values and 95% confidence intervals (CI). A p-value<0.05 was considered statistically significant.  Results: A total of 1,828 gastric cancer cases were included in the statistical analysis. The average age of patients was 65 years. The bivariate Cox's regression analysis demonstrated that the risk of gastric cancer mortality increased gradually with the age of cancer patients. The HR and 95% CI were as follows: 1.5 (1.1-1.8) and 2.1 (1.5-2.5) in the 46-65 years and >65 years groups, respectively, with the <46 years group as a reference. Moreover, multivariable Cox's regression analysis proved that age is an independent risk factor for GC mortality (HR = 1.4; 95% CI = 1.2-1.8; p<.001).  Conclusion: We found that age at diagnosis was a significant predictor of the worse survival of GC patients diagnosed between 2015 and 2020 in Georgia.

What Does "Palliative Care" Represent in Research Using Secondary Data?

While much research has been done regarding "palliative care" using retrospective cohort studies of large datasets, the data sources may not be capturing specialty palliative care services. This article aims to clarify what source data are used in such studies, how specialty palliative care services are determined to have been provided or not, and mismatches between the nature of the data and the interpretation of researchers. Major US data sources that are examined include cancer registries such as the National Cancer Database; health systems' internal data; state and nation-level hospital admissions data; and claims data from Medicare and commercial payers. Problematic studies are common. Many used cancer registry data and mischaracterized palliative intent for a given cancer treatment as "palliative care services." Dozens relied on the diagnosis code for "encounter for palliative care" which lacks adequate validity for use in research. Researchers, peer-reviewers, and research consumers are cautioned about these potential pitfalls that lead to meaningless or misleading research papers. Suggestions are made regarding more rigorous methods and trustworthy data sources and additional research that can lead to consensus among researchers on these issues.

Effects of Medicaid managed care on early detection of cancer: Evidence from mandatory Medicaid managed care program in Pennsylvania.

OBJECTIVE: To examine changes in late- versus early-stage diagnosis of cancer associated with the introduction of mandatory Medicaid managed care (MMC) in Pennsylvania. DATA SOURCES AND STUDY SETTING: We analyzed data from the Pennsylvania cancer registry (2010-2018) for adult Medicaid beneficiaries aged 21-64 newly diagnosed with a solid tumor. To ascertain Medicaid and managed care status around diagnosis, we linked the cancer registry to statewide hospital-based facility records collected by an independent state agency (Pennsylvania Health Care Cost Containment Council). STUDY DESIGN: We leveraged a natural experiment arising from county-level variation in mandatory MMC in Pennsylvania. Using a stacked difference-in-differences design, we compared changes in the probability of late-stage cancer diagnosis among those residing in counties that newly transitioned to mandatory managed care to contemporaneous changes among those in counties with mature MMC programs. DATA COLLECTION/EXTRACTION METHODS: N/A. PRINCIPAL FINDINGS: Mandatory MMC was associated with a reduced probability of late-stage cancer diagnosis (-3.9 percentage points; 95% CI: -7.2, -0.5; p = 0.02), particularly for screening-amenable cancers (-5.5 percentage points; 95% CI: -10.4, -0.6; p = 0.03). We found no significant changes in late-stage diagnosis among non-screening amenable cancers. CONCLUSIONS: In Pennsylvania, the implementation of mandatory MMC for adult Medicaid beneficiaries was associated with earlier stage of diagnosis among newly diagnosed cancer patients with Medicaid, especially those diagnosed with screening-amenable cancers. Considering that over half of the sample was diagnosed with late-stage cancer even after the transition to mandatory MMC, Medicaid programs and managed care organizations should continue to carefully monitor receipt of cancer screening and design strategies to reduce barriers to guideline-concordant screening or diagnostic procedures.

A Glimpse into the Epidemiology of Geriatric Cancers in India: Report from the Indian Population Based Cancer Registries.

INTRODUCTION: Indian population is aging and the cancer rates are rising.  Older adults (OAs)(≥60 years) with cancer require specialized care.  However, data on geriatric cancer epidemiology is scarce. METHODS: The study compiled the geriatric cancer data from the published reports(2012-2014) of Indian population-based cancer registries(PBCRs). RESULTS: Of the 1,61,363 cancers registered in the Indian PBCRs, 72,446(44.9%) occur in OAs, with  21,805(30.1%), 18,349(25.3%), 14,645(20.2%), and 17,647(24.4%) occurring in 60-64, 65-69, 70-74, and ≥75year age groups.  The truncated incidence rates for OAs are 555.9,404.5, and 481.9 for males, females, and OA populations respectively.  The common cancers are lung, prostate, and esophagus cancers in males, breast, cervix, and lung in females.  The overall common cancers are lung, prostate, and breast.  While  >50% of the incident cases of prostate, and bladder cancers occurred in OAs, <20% of Hodgkin lymphoma and thyroid cancers occurred in OAs. OA cancer epidemiology has a regional variation, highest in South India and lowest in Western India. CONCLUSION: The current study quantifies the cancer burden in the Indian geriatric population. Understanding the epidemiology of geriatric cancers is vital to health program planning and implementation. Increased awareness, focused resource allocation, research, and national policies for streamlining care will all help to improve geriatric cancer outcomes.

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.

Cancer Registry Enrichment via Linkage with Hospital-Based Electronic Medical Records: A Pilot Investigation.

Background: Hospital electronic medical record (EMR) systems are becoming increasingly integrated for management of patient data, especially given recent policy changes issued by the Centers for Medicaid and Medicare Services. In addition to data management, these data provide evidence for patient-centered outcomes research for a range of diseases, including cancer. Integrating EMR patient data with existing disease registries strengthens all essential components for assuring optimal health outcomes. Objectives: To identify the mechanisms for extracting, linking, and processing hospital EMR data with the Florida Cancer Data System (FCDS); and to assess the completeness of existing registry treatment data as well as the potential for data enhancement. Methods: A partnership among the Florida Department of Health, FCDS, and a large Florida hospital system was established to develop methods for hospital EMR extraction and transmission. Records for admission years between 2007 and 2010 were extracted using ICD-9-CM codes as the trigger and were linked with the cancer registry for patients with invasive cancers of the breast. Results: A total of 11,506 unique patients were linked with a total of 12,804 unique breast tumors. Evaluation of existing registry treatment data against the hospital EMR produced a total of 5% of registry records with updated surgery information, 1% of records with updated radiation information, and 7% of records updated with chemotherapy information. Enhancement of registry treatment information was particularly affected by the availability of chemotherapy medications data. Conclusion: Hospital EMR linkages to cancer disease registries is feasible but challenged by lack of standards for data collection, coding and transmission, comprehensive description of available data, and the exclusion of certain hospital datasets. The FCDS standard treatment data variables are highly robust and complete but can be enhanced by the addition of detailed chemotherapy regimens that are commonly used in patient centered outcomes research.

Factors Associated with Primary Liver Cancer Survival in a Southern Italian Setting in a Changing Epidemiological Scenario.

A retrospective observational study utilising cancer incidence data from a population-based registry investigated determinants affecting primary liver cancer survival in a southern Italian region with high hepatitis viral infection rates and obesity prevalence. Among 2687 patients diagnosed between 2006 and 2019 (65.3% male), a flexible hazard-based regression model revealed factors influencing 5-year survival rates. High deprivation levels [HR = 1.41 (95%CI = 1.15-1.76); p < 0.001], poor access to care [HR = 1.99 (95%IC = 1.70-2.35); p < 0.0001], age between 65 and 75 [HR = 1.48 (95%IC = 1.09-2.01); p < 0.05] or >75 [HR = 2.21 (95%CI = 1.62-3.01); p < 0.0001] and residing in non-urban areas [HR = 1.35 (95%CI = 1.08-1.69); p < 0.01] were associated with poorer survival estimates. While deprivation appeared to be a risk factor for primary liver cancer patients residing within the urban area, the geographic distance from specialised treatment centres emerged as a potential determinant of lower survival estimates for residents in the non-urban areas. After balancing the groups of easy and poor access to care using a propensity score approach, poor access to care and a lower socioeconomic status resulted in potentially having a negative impact on primary liver cancer survival, particularly among urban residents. We emphasise the need to interoperate cancer registries with other data sources and to deploy innovative digital solutions to improve cancer prevention.

Physical Activity Among Utah Cancer Survivors: Analysis From a Population-Based Statewide Survey.

BACKGROUND: Regular physical activity improves cancer survivors' health-related quality of life and physical function. We estimated the proportion of Utah cancer survivors meeting U.S. Department of Health and Human Services guidelines for weekly physical activity (aerobic plus strength exercise) and identify sociodemographic, cancer, and health-related factors associated with meeting guidelines. METHODS: Survivors randomly sampled from Utah Cancer Registry records were surveyed from 2018 to 2022 to ascertain physical activity. We calculated the percent of survivors meeting guidelines and conducted logistic regression to assess predictors of meeting guidelines. Analyses were weighted to account for complex survey sample design and nonresponse and age adjusted. RESULTS: Among Utah cancer survivors, 20.7% (95% CI, 18.5%-23.2%) met guidelines for both aerobic activity and strength exercise. 22.4% reported no aerobic exercise in a typical week, and 59.4% reported no strength exercise. Survivors 75 or older were less likely to meet physical activity guidelines than those under 55 (adjusted odds ratio: 0.40; 95% CI, 0.25-0.65). Survivors with a bachelor's degree or higher were more likely to meet physical activity guidelines than those without a college degree. Individuals with poorer overall health were less likely to report sufficient physical activity. Individuals treated with both chemotherapy and radiation had decreased odds of meeting guidelines compared to no treatment (adjusted odds ratio: 0.54; 95% CI, 0.29-0.99). CONCLUSIONS: Most Utah cancer survivors, and particularly those who received multiple modes of adjuvant treatment, are not participating in sufficient physical activity to improve longevity and quality of life after cancer.

Trends in lung cancer survival in the Nordic countries 1990-2016: The NORDCAN survival studies.

OBJECTIVES: The aim of this study was to evaluate if the previously reported improvements in lung cancer survival were consistent across age at diagnosis and by lung cancer subtypes. MATERIALS AND METHODS: Data on lung cancers diagnosed between 1990 and 2016 in Denmark, Finland, Iceland, Norway and Sweden were obtained from the NORDCAN database. Flexible parametric models were used to estimate age-standardized and age-specific relative survival by sex, as well as reference-adjusted crude probabilities of death and life-years lost. Age-standardised survival was also estimated by the three major subtypes; adenocarcincoma, squamous cell and small-cell carcinoma. RESULTS: Both 1- and 5-year relative survival improved continuously in all countries. The pattern of improvement was similar across age groups and by subtype. The largest improvements in survival were seen in Denmark, while improvements were comparatively smaller in Finland. In the most recent period, age-standardised estimates of 5-year relative survival ranged from 13% to 26% and the 5-year crude probability of death due to lung cancer ranged from 73% to 85%. Across all Nordic countries, survival decreased with age, and was lower in men and for small-cell carcinoma. CONCLUSION: Lung cancer survival has improved substantially since 1990, in both women and men and across age. The improvements were seen in all major subtypes. However, lung cancer survival remains poor, with three out of four patients dying from their lung cancer within five years of diagnosis.

[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.

Survival of European adolescents and young adults diagnosed with cancer in 2010-2014.

BACKGROUND: We used the comprehensive definition of AYA (age 15 to 39 years) to update 5-year relative survival (RS) estimates for AYAs in Europe and across countries and to evaluate improvements in survival over time. METHODS: We used data from EUROCARE-6. We analysed 700,000 AYAs with cancer diagnosed in 2000-2013 (follow-up to 2014). We focused the analyses on the 12 most common cancers in AYA. We used period analysis to estimate 5-year RS in Europe and 5-year RS differences in 29 countries (2010-2014 period estimate) and over time (2004-06 vs. 2010-14 period estimates). FINDINGS: 5-year RS for all AYA tumours was 84%, ranging from 70% to 90% for most of the 12 tumours analysed. The exceptions were acute lymphoblastic leukaemia, acute myeloid leukaemia, and central nervous system tumours, presenting survival of 59%, 61%, and 62%, respectively. Differences in survival were observed among European countries for all cancers, except thyroid cancers and ovarian germ-cell tumours. Survival improved over time for most cancers in the 15- to 39-year-old age group, but for fewer cancers in adolescents and 20- to 29-year-olds. INTERPRETATION: This is the most comprehensive study to report the survival of 12 cancers in AYAs in 29 European countries. We showed variability in survival among countries most likely due to differences in stage at diagnosis, access to treatment, and lack of referral to expert centres. Survival has improved especially for haematological cancers. Further efforts are needed to improve survival for other cancers as well, especially in adolescents.

Sex Differences in Cancer Incidence Rates by Race and Ethnicity: Results from the Surveillance, Epidemiology, and End Results (SEER) Registry (2000-2019).

Men have 2-3 times the rate of most non-sex-specific cancers compared to women, but whether this is due to differences in biological or environmental factors remains poorly understood. This study investigated sex differences in cancer incidence by race and ethnicity. Cancer incidence data from the Surveillance, Epidemiology, and End Result (SEER) program (2000-2019) were used to calculate male-to-female incidence rate ratios (MF IRRs) for each cancer site, stratified by race and ethnicity, and age-standardized to the 2000 U.S. population for individuals ages ≥ 20 years. Among 49 cancer sites, 44 showed male predominance (MF IRR > 1), with seven inconsistencies across race and ethnicity, including cancers of the lip, tongue, hypopharynx, retroperitoneum, larynx, pleura cancers, and Kaposi sarcoma. Four cancers exhibited a female predominance (MF IRR < 1), with only gallbladder and anus cancers varying by race and ethnicity. The MF IRRs for cancer of the cranial nerves and other nervous system malignancies showed no sex differences and were consistent (MF IRR = 1) across race and ethnicity. The MF IRRs for most cancers were consistent across race and ethnicity, implying that biological etiologies are driving the observed sex difference. The lack of MF IRR variability by race and ethnicity suggests a minimal impact of environmental exposure on sex differences in cancer incidence. Further research is needed to identify biological drivers of sex differences in cancer etiology.

Survival trends for patients diagnosed with cutaneous malignant melanoma in the Nordic countries 1990-2016: The NORDCAN survival studies.

BACKGROUND: The survival in patients diagnosed with cutaneous malignant melanoma (CMM) has improved in the Nordic countries in the last decades. It is of interest to know if these improvements are observed in all ages and for both women and men. METHODS: Patients diagnosed with CMM in the Nordic countries in 1990-2016 were identified in the NORDCAN database. Flexible parametric relative survival models were fitted, except for Iceland where a non-parametric Pohar-Perme approach was used. A range of survival metrics were estimated by sex, both age-standardised and age-specific. RESULTS: The 5-year relative survival improved in all countries, in both women and men and across age. While the improvement was more pronounced in men, women still had a higher survival at the end of the study period. The survival was generally high, with age-standardised estimates of 5-year relative survival towards the end of the study period ranging from 85% in Icelandic men to 95% in Danish women. The age-standardised and reference-adjusted 5-year crude probability of death due to CMM ranged from 5% in Danish and Swedish women to 13% in Icelandic men. CONCLUSION: Although survival following CMM was relatively high in the Nordic countries in 1990, continued improvements in survival were observed throughout the study period in both women and men and across age.

Ambulatory Routine Care in Oncology in Germany: Real-World Survival Data.

INTRODUCTION: Survival data reported by randomised controlled trials are collected in a highly selected patient population and can thus only be transferred to a limited extent to real-world patients: the patients in routine care are mostly older, present with more comorbidities and a worse general state of health. This so-called efficacy-effectiveness gap typically results in inferior survival data in routine healthcare. METHODS: Six prospective clinical tumour registries recruited a total of 11,679 patients receiving systemic therapy in haemato-oncological practices in Germany between 2006 and 2020. For these patients with advanced colorectal cancer, breast cancer, lung cancer, pancreatic cancer, renal cell cancer, and lymphatic neoplasms, overall survival was analysed. A comprehensive literature search was performed to identify suitable pivotal randomised controlled trials. RESULTS: Median overall survival of patients treated in German routine care, with advanced colorectal, breast, lung, and pancreatic cancer, as well as with diffuse large B-cell lymphoma and multiple myeloma, is not shorter than the respective survival data reported in trials. Patients with advanced renal cell carcinoma, chronic lymphocytic leukaemia, or indolent non-Hodgkin lymphoma showed slightly lower survival rates compared to clinical trials. CONCLUSIONS: Despite less favourable patient characteristics, survival data from patients with cancer treated in ambulatory routine care in Germany are in range with results from randomised controlled 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.

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.

Ontology-Based AI Design Patterns and Constraints in Cancer Registry Data Validation.

Data validation in cancer registration is a critical operation but is resource-intensive and has traditionally depended on proprietary software. Ontology-based AI is a novel approach utilising machine reasoning based on axioms formally described in description logic. This is a different approach from deep learning AI techniques but not exclusive of them. The advantage of the ontology approach lies in its ability to address a number of challenges concurrently. The disadvantages relate to computational costs, which increase with language expressivity and the size of data sets, and class containment restrictions imposed by description logics. Both these aspects would benefit from the availability of design patterns, which is the motivation behind this study. We modelled the European cancer registry data validation rules in description logic using a number of design patterns and showed the viability of the approach. Reasoning speeds are a limiting factor for large cancer registry data sets comprising many hundreds of thousands of records, but these can be offset to a certain extent by developing the ontology in a modular way. Data validation is also a highly parallelisable process. Important potential future work in this domain would be to identify and optimise reusable design patterns, paying particular attention to avoiding any unintended reasoning efficiency hotspots.

Childhood and Adolescent Central Nervous System Tumours in Spain: Incidence and Survival over 20 Years: A Historical Baseline for Current Assessment.

BACKGROUND: Central nervous system (CNS) neoplasms are highly frequent solid tumours in children and adolescents. While some studies have shown a rise in their incidence in Europe, others have not. Survival remains limited. We addressed two questions about these tumours in Spain: (1) Is incidence increasing? and (2) Has survival improved? METHODS: This population-based study included 1635 children and 328 adolescents from 11 population-based cancer registries with International Classification of Childhood Cancer Group III tumours, incident in 1983-2007. Age-specific and age-standardised (world population) incidence rates (ASRws) were calculated. Incidence time trends were characterised using annual percent change (APC) obtained with Joinpoint. Cases from 1991 to 2005 (1171) were included in Kaplan-Meier survival analyses, and the results were evaluated with log-rank and log-rank for trend tests. Children's survival was age-standardised using: (1) the age distribution of cases and the corresponding trends assessed with Joinpoint; and (2) European weights for comparison with Europe. RESULTS: ASRw 1983-2007: children: 32.7 cases/106; adolescents: 23.5 cases/106. The overall incidence of all tumours increased across 1983-2007 in children and adolescents. Considering change points, the APCs were: (1) children: 1983-1993, 4.3%^ (1.1; 7.7); 1993-2007, -0.2% (-1.9; 1.6); (2) adolescents: 1983-2004: 2.9%^ (0.9; 4.9); 2004-2007: -7.7% (-40; 41.9). For malignant tumours, the trends were not significant. 5-year survival was 65% (1991-2005), with no significant trends (except for non-malignant tumours). CONCLUSIONS: CNS tumour incidence in Spain was found to be similar to that in Europe. Rises in incidence may be mostly attributable to changes in the registration of non-malignant tumours. The overall malignant CNS tumour trend was compatible with reports for Southern Europe. Survival was lower than in Europe, without improvement over time. We provide a baseline for assessing current paediatric oncology achievements and incidence in respect of childhood and adolescent CNS tumours.

Automated extraction of information from free text of Spanish oncology pathology reports

Background: Pathology reports are stored as unstructured, ungrammatical, fragmented, and abbreviated free text with linguistic variability among pathologists. For this reason, tumor information extraction requires a significant human effort. Recording data in an efficient and high-quality format is essential in implementing and establishing a hospital-based-cancer registry Objective: This study aimed to describe implementing a natural language processing algorithm for oncology pathology reports. Methods: An algorithm was developed to process oncology pathology reports in Spanish to extract 20 medical descriptors. The approach is based on the successive coincidence of regular expressions. Results: The validation was performed with 140 pathological reports. The topography identification was performed manually by humans and the algorithm in all reports. The human identified morphology in 138 reports and by the algorithm in 137. The average fuzzy matching score was 68.3 for Topography and 89.5 for Morphology. Conclusions: A preliminary algorithm validation against human extraction was performed over a small set of reports with satisfactory results. This shows that a regular-expression approach can accurately and precisely extract multiple specimen attributes from free-text Spanish pathology reports. Additionally, we developed a website to facilitate collaborative validation at a larger scale which may be helpful for future research on the subject.

Introducción: Los reportes de patología están almacenados como texto libre sin estructura, gramática, fragmentados o abreviados, con variabilidad lingüística entre patólogos. Por esta razón, la extracción de información de tumores requiere un esfuerzo humano significativo. Almacenar información en un formato eficiente y de alta calidad es esencial para implementar y establecer un registro hospitalario de cáncer. Objetivo: Este estudio busca describir la implementación de un algoritmo de Procesamiento de Lenguaje Natural para reportes de patología oncológica. Métodos: Desarrollamos un algoritmo para procesar reportes de patología oncológica en Español, con el objetivo de extraer 20 descriptores médicos. El abordaje se basa en la coincidencia sucesiva de expresiones regulares. Resultados: La validación se hizo con 140 reportes de patología. La identificación topográfica se realizó por humanos y por el algoritmo en todos los reportes. La morfología fue identificada por humanos en 138 reportes y por el algoritmo en 137. El valor de coincidencias parciales (fuzzy matches) promedio fue de 68.3 para Topografía y 89.5 para Morfología. Conclusiones: Se hizo una validación preliminar del algoritmo contra extracción humana sobre un pequeño grupo de reportes, con resultados satisfactorios. Esto muestra que múltiples atributos del espécimen pueden ser extraídos de manera precisa de texto libre de reportes de patología en Español, usando un abordaje de expresiones regulares. Adicionalmente, desarrollamos una página web para facilitar la validación colaborativa a gran escala, lo que puede ser beneficioso para futuras investigaciones en el tema.