Impact of the first wave of the COVID-19 pandemic on cancer registration and cancer care: a European survey.

BACKGROUND: The coronavirus disease COVID-19 pandemic posed a number of challenges to the oncology community, particularly the diagnosis and care of cancer patients while ensuring safety from the virus for both patients and professionals: minimization of visits to the hospital, cancellation of the screening programmes and the difficulties in the management and operation of cancer registries (CRs) while working remotely. This article describes the effects in the medium term of the first wave of the COVID-19 pandemic on cancer registration in Europe, focusing on changes in cancer detection and treatment, possible reduction of CR resources and difficulties in the access to data sources. METHODS: A questionnaire was distributed in June 2020 to the directors of 108 CRs from 34 countries affiliated to the European Network of Cancer Registries, providing a 37% response rate. RESULTS: The results of the survey showed that cancer-screening programmes were mostly stopped or slowed down in the majority of regions covered by the respondent CRs. Cancer diagnostics and treatments were severely disrupted. The cancer registration process was also disrupted, due to changes in the work modalities for the personnel, as well as to the difficulties in accessing sources and/or receiving the notifications. In some CRs, staff was allocated to different activities related to controlling the pandemic. Several CRs reported that they were investigating the impact of COVID-19 on cancer care via dedicated studies. CONCLUSIONS: A careful analysis will be necessary for proper interpretation of temporal and geographical variations of the 2020 cancer burden indicators.

Geographical and temporal differences in gastric and oesophageal cancer registration by subsite and morphology in Europe.

Background: Gastric and oesophageal cancers pose a serious public health concern. In 2020 a total of 189,031 incident cases (136,038 stomach, 52,993 oesophagus) and 142,508 deaths (96,997 stomach, 45,511 oesophagus) were estimated in Europe. Oesophago-gastric cancers are a heterogeneous disease, with different aetiology and epidemiology for the various topographic subsites and main histopathological types. Topography subsite and morphology is key information to allow differentiating oesophago-gastric cancers. Correct registration and coding of such variables are fundamental in allowing proper description of the epidemiology of different subsites and histopathological types of oesophago-gastric cancers. The aim of this article is to highlight geographical and temporal variability in topography and morphology of oesophago-gastric cancers observed in Europe in the considered period. Methods: Data collected in the framework of the ENCR-JRC (European Commission's Joint Research Centre) data call and feeding the European Cancer Information System (ECIS) were used to assess the variability of topography and morphology registration of gastric and oesophageal cancer in Europe in the period 1995-2014. Malignant cancers of the stomach and the oesophagus were selected following, respectively, topography codes C16 and C15 of the International Classification of Diseases for Oncology, third edition (ICD-O-3). Analyses were performed by subsite, morphology group, year, sex, and European region. Results: A total of 840,464 incident cases occurring in the period 1995-2014 - 579,264 gastric (67.2%) and 276,260 (32.8%) oesophageal carcinomas - was selected for the analysis. Data was recorded by 53 PBCRs (9 based in Northern Europe, 14 in Western Europe, 3 in Eastern Europe and 27 in Southern Europe) from 19 countries. Conclusion: A wide variability in oesophago-gastric cancers topographic subsites and histopathological types patterns was observed, with a corresponding improvement in accuracy of registration in the analysis period. PBCRs are ideally placed to guide the epidemiological evaluations of such a complex group of diseases, in collaboration with clinicians, patients and other public health stakeholders.

Quality indicators: completeness, validity and timeliness of cancer registry data contributing to the European Cancer Information System.

Population-based Cancer Registries (PBCRs) are tasked with collecting high-quality data, important for monitoring cancer burden and its trends, planning and evaluating cancer control activities, clinical and epidemiological research and development of health policies. The main indicators to measure data quality are validity, completeness, comparability and timeliness. The aim of this article is to evaluate the quality of PBCRs data collected in the first ENCR-JRC data call, dated 2015. Methods: All malignant tumours, except skin non-melanoma, and in situ and uncertain behaviour of bladder were obtained from 130 European general PBCRs for patients older than 19 years. Proportion of cases with death certificate only (DCO%), proportion of cases with unknown primary site (PSU%), proportion of microscopically verified cases (MV%), mortality to incidence (M:I) ratio, proportion of cases with unspecified morphology (UM%) and the median of the difference between the registration date and the incidence date were computed by sex, age group, cancer site, period and PBCR. Results: A total of 28,776,562 cases from 130 PBCRs, operating in 30 European countries were included in the analysis. The quality of incidence data reported by PBCRs has been improving across the study period. Data quality is worse for the oldest age groups and for cancer sites with poor survival. No differences were found between males and females. High variability in data quality was detected across European PBCRs. Conclusion: the results reported in this paper are to be interpreted as the baseline for monitoring PBCRs data quality indicators in Europe along time.

An ontology-based approach for developing a harmonised data-validation tool for European cancer registration.

BACKGROUND: Population-based cancer registries constitute an important information source in cancer epidemiology. Studies collating and comparing data across regional and national boundaries have proved important for deploying and evaluating effective cancer-control strategies. A critical aspect in correctly comparing cancer indicators across regional and national boundaries lies in ensuring a good and harmonised level of data quality, which is a primary motivator for a centralised collection of pseudonymised data. The recent introduction of the European Union's general data-protection regulation (GDPR) imposes stricter conditions on the collection, processing, and sharing of personal data. It also considers pseudonymised data as personal data. The new regulation motivates the need to find solutions that allow a continuation of the smooth processes leading to harmonised European cancer-registry data. One element in this regard would be the availability of a data-validation software tool based on a formalised depiction of the harmonised data-validation rules, allowing an eventual devolution of the data-validation process to the local level. RESULTS: A semantic data model was derived from the data-validation rules for harmonising cancer-data variables at European level. The data model was encapsulated in an ontology developed using the Web-Ontology Language (OWL) with the data-model entities forming the main OWL classes. The data-validation rules were added as axioms in the ontology. The reasoning function of the resulting ontology demonstrated its ability to trap registry-coding errors and in some instances to be able to correct errors. CONCLUSIONS: Describing the European cancer-registry core data set in terms of an OWL ontology affords a tool based on a formalised set of axioms for validating a cancer-registry's data set according to harmonised, supra-national rules. The fact that the data checks are inherently linked to the data model would lead to less maintenance overheads and also allow automatic versioning synchronisation, important for distributed data-quality checking processes.

The European cancer burden in 2020: Incidence and mortality estimates for 40 countries and 25 major cancers.

INTRODUCTION: Europe is an important focus for compiling accurate and up-to-date world cancer statistics owing to its large share of the world's total cancer burden. This article presents incidence and mortality estimates for 25 major cancers across 40 individual countries within European areas and the European Union (EU-27) for the year 2020. METHODS: The estimated national incidence and mortality rates are based on statistical methodology previously applied and verified using the most recently collected incidence data from 151 population-based cancer registries, mortality data and 2020 population estimates. RESULTS: Estimates reveal 4 million new cases of cancer (excluding non-melanoma skin cancer) and 1.9 million cancer-related deaths. The most common cancers are: breast in women (530,000 cases), colorectum (520,000), lung (480,000) and prostate (470,000). These four cancers account for half the overall cancer burden in Europe. The most common causes of cancer deaths are: lung (380,000), colorectal (250,000), breast (140,000) and pancreatic (130,000) cancers. In EU-27, the estimated new cancer cases are approximately 1.4 million in males and 1.2 million in females, with over 710,000 estimated cancer deaths in males and 560,000 in females. CONCLUSION: The 2020 estimates provide a basis for establishing priorities in cancer-control measures across Europe. The long-established role of cancer registries in cancer surveillance and the evaluation of cancer control measures remain fundamental in formulating and adapting national cancer plans and pan-European health policies. Given the estimates are built on recorded data prior to the onset of coronavirus disease 2019 (COVID-19), they do not take into account the impact of the pandemic.

Cancer registries - guardians of breast cancer biomarker information: A systematic review.

BACKGROUND: Breast cancer is the most common cancer and the leading cause of cancer-related death in females, with a large societal and economic impact. Decisions regarding its treatment are largely affected by the categorization into different subtypes with hormone receptor status and HER2 status being the most important predictive factors. Other biological markers play an important role for prognostic and predictive reasons. The data collection and harmonization of cancer cases are performed by cancer registries whose collection of parameters largely differs, partially including results from biomarker testing. METHODS: This systematic literature review consisting of a total of 729 reports determined whether information about biomarker testing in breast cancer cases is collected and published by cancer registries worldwide. RESULTS: The number of publications using breast cancer biomarker data from registries steeply rose with the beginning of the 21st century and some hospital-based and population-based cancer registries reacted with immediate collection of biomarker data following the recommendation of clinical guidelines. For female breast cancer, biomarkers have achieved an essential clinical value and this review points to a steady increase in the collection of biomarker data by cancer registries during the last decade. CONCLUSIONS: In the future, recommendations for biomarker data collection and coding by cancer registries may be required to ensure harmonization and comparability of the data.