Abstract
Background
Multiple cancer registries in Australia are used to track the incidence of cancer and the outcomes of their treatment. These registries can be broadly classed into a few types ...with an increasing number of registries comes a greater potential for collaboration and linkage. This article aims to critically review cancer registry types in Australia and evaluate the Australian Cancer registry landscape to identify these areas.
Methods
A systematic review was performed through MEDLINE, EMBASE and Cochrane Library, updated to September 2022 using a predefined search strategy. Inclusion criteria were those that only analysed Australian and/or New Zealand based cancer registries, appraised the utility of cancer outcomes and/or incidence registries, and explored the utility of linked databases using cancer outcomes and/or incidence registries. The grey literature was searched for all operating cancer registries in Australia. Details of registry infrastructure was extracted for analysis and comparison.
Results
Three thousand two hundred and sixteen articles identified from the three databases. Twelve met the inclusion criteria. Twenty‐eight registries were identified using the grey literature. Strengths and weaknesses of Cancer Outcome Registries(COR) and Cancer Incidence Registries(CIR) were compared. Data linkage between registries or with other healthcare databases show great benefits in improving evidence for cancer research but are challenging to implement. Both registry types utilize differing modes of administration, influencing their accuracy and completeness.
Conclusion
Outcome registries provide detailed data but their weakness lies in incomplete data coverage. Incidence registries record a large dataset which contain inaccuracies. Improving coverage of quality outcome registries, and quality assurance of data in incidence registries is required to ensure collection of accurate, meaningful data. Areas for collaboration identified included establishment of defined definitions and outcomes, data linkage between registry types or with healthcare databases, and collaboration in logistical planning to improve clinical utility of cancer registries.
The Registry has gathered information on intestine transplantation (IT) since 1985. During this time, individual centers have reported progress but small case volumes potentially limit the ...generalizability of this information. The present study was undertaken to examine recent global IT activity. Activity was assessed with descriptive statistics, Kaplan–Meier survival curves and a multiple variable analysis. Eighty‐two programs reported 2887 transplants in 2699 patients. Regional practices and outcomes are now similar worldwide. Current actuarial patient survival rates are 76%, 56% and 43% at 1, 5 and 10 years, respectively. Rates of graft loss beyond 1 year have not improved. Grafts that included a colon segment had better function. Waiting at home for IT, the use of induction immune‐suppression therapy, inclusion of a liver component and maintenance therapy with rapamycin were associated with better graft survival. Outcomes of IT have modestly improved over the past decade. Case volumes have recently declined. Identifying the root reasons for late graft loss is difficult due to the low case volumes at most centers. The high participation rate in the Registry provides unique opportunities to study these issues.
The authors analyze worldwide data from the Intestinal Transplant Registry to explore the recent decline in case volumes and describe the modest improvement in outcomes over the past decade.
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.
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.
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.
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.
•The 2020 incidence estimates derived from 151 population-based cancer registries' data.•Over 4 million new cancer cases and 1.9 million cancer-related deaths are estimated in Europe for 2020.•Half the overall cancer diagnoses are from breast , colorectal , lung and prostate cancers.•The most common cancer-related deaths are from lung , colorectal , breast and pancreatic cancers.•The 2020 estimates are key to assess and monitor cancer-control measures across Europe.
Danish registers contain information on many important health and social issues. Because
all Danish citizens have a unique personal identification number, linkage at the
individual level between ...these nationwide registers and other data sources is possible and
feasible. In this paper we briefly introduce selected Danish registers and the data
structure and requirements for getting access to data at Statistics Denmark, which is the
main provider of register data. We introduce the Danish Data Archive and briefly present
the Act on Processing of Personal Data, which is the legal foundation for analyses of
register-based data in Denmark.
Vascular surgery registries report on procedures and outcomes to promote patient safety and drive quality improvement. International registries have contributed significantly to the VASCUNET ...collaborative abdominal aortic aneurysm (AAA) outcome projects. This scoping review aimed to outline the national registries in vascular surgery that currently participate in the VASCUNET collaborative AAA projects.
A scoping review of all published VASCUNET AAA studies and validation reports between 1997 and 2024 was undertaken. A survey was conducted among representatives of the international vascular registries contributing to VASCUNET collaborative AAA projects.
Currently, vascular registries from 10 countries (Australia, Denmark, Finland, Hungary, Iceland, New Zealand, Norway, Sweden, Switzerland, and the UK) contribute to the current VASCUNET collaborative AAA project, of which eight have national coverage. In the past, three countries (Germany, Malta, and Italy) have participated in previous VASCUNET AAA projects, and a further three countries (Serbia, Greece, and Portugal) have planned participation in future projects. External validity is high for all current registries, with most reporting rates of > 90%. The majority have internal validation processes to assess data accuracy. VASCUNET mediated validation has also been performed by the consortium for five countries to date (Hungary, Sweden, Denmark, Malta, and Switzerland), for which a high degree of external and internal validity was identified. Most registries have established mechanisms for data linkage with national administrative datasets or insurance claims datasets and contribute to quality improvement through regular reporting to participating centres.
National vascular registries from nations participating in the VASCUNET collaborative AAA projects are largely comprehensive, with high case ascertainment rates and good quality data with internal quality assurance. This provides a template for new registries wishing to join the VASCUNET collaboration and a benchmark for future research.
Children with epilepsy are at increased risk of other disorders and difficulties, preceding, cooccurring with, or after the diagnosis of epilepsy. Risk estimates vary, few studies are ...population-based, and few provide comprehensive assessments of comorbidities. We used nationwide registry data to describe frequencies of medical, neurologic, developmental, and psychiatric conditions occurring before and after children are diagnosed with childhood epilepsy.
Data were obtained from the Norwegian Patient Registry, which is an administrative database recording International Classification of Diseases, 10th Revision diagnoses from all government-funded specialist health services in Norway (outpatient consultations and hospitalizations). We included data from the years 2008 through 2013 for all children born in Norway between 1996 and 2013 (0-17 years of age at the end of follow-up). Children with epilepsy were compared with the general child population, adjusting for sex and age. We also compared children with complicated epilepsies (ie, epilepsies with additional neurologic and/or developmental disorders) to children with uncomplicated epilepsies.
The study population included 1 125 161 children. There were 6635 (0.6%) children with epilepsy. Nearly 80% of children with epilepsy had ≥1 comorbid disorder. All types of disorders were more frequent in children with epilepsy, with additional medical disorders recorded in 55%, neurologic disorders in 41%, and developmental/psychiatric disorders in 43%. Children with complicated epilepsies had the highest overall levels of comorbidity, but the risk of medical and psychiatric comorbidities was also substantial among children with uncomplicated epilepsies.
The overall frequency of comorbid disease is high in children with epilepsy, including children with presumably uncomplicated epilepsies.
Purpose: Over the last decades, several twin/multiples registries have been developed worldwide, mostly concentrated in Europe and high-income countries (HICs). In Iran, we lack accurate nationwide ...epidemiological and biobank data on twins. We established the Iranian Newborn Multiples Registry (IRNMR) to evaluate the role of genetics and environmental factors in the variation of phenotypes among newborn monozygotic (MZ) and dizygotic (DZ) twin pairs. IRNMR is a multicenter hospital-based registry. Materials and methods: In the pilot phase, we collected epidemiological data from multiples born in Imam Khomeini Hospital complex and Aban Hospital located in Tehran, the capital of Iran, with a population exceeding 8 million, Allameh Bohlool Gonabadi Hospital, Gonabad, Razavi Khorasan, and Shahid Sadoughi Hospital, Yazd, Iran. Results: The IRNMR has recruited 457 sets of newborn twins and multiples so far. We hold follow-up sessions by mother and child health professionals to monitor multiples' growth, development, diseases, and mortality. Conclusions: We successfully developed a newborn multiples registry in Iran. This registry will create an invaluable database to study the relative influence of genes and environmental factors on various chronic diseases, growth, development, and behavioral disorders. We intend to collaborate with other centers to develop a large multicenter nationwide multiple birth registry and biobank in Iran.
BACKGROUND
Stomach cancer was a leading cause of cancer‐related deaths early in the 20th century and has steadily declined over the last century in the United States. Although incidence and death ...rates are now low, stomach cancer remains an important cause of morbidity and mortality in black, Asian and Pacific Islander, and American Indian/Alaska Native populations.
METHODS
Data from the CONCORD‐2 study were used to analyze stomach cancer survival among males and females aged 15 to 99 years who were diagnosed in 37 states covering 80% of the US population. Survival analyses were corrected for background mortality using state‐specific and race‐specific (white and black) life tables and age‐standardized using the International Cancer Survival Standard weights. Net survival is presented up to 5 years after diagnosis by race (all, black, and white) for 2001 through 2003 and 2004 through 2009 to account for changes in collecting Surveillance, Epidemiology, and End Results Summary Stage 2000 data from 2004.
RESULTS
Almost one‐third of stomach cancers were diagnosed at a distant stage among both whites and blacks. Age‐standardized 5‐year net survival increased between 2001 to 2003 and 2004 to 2009 (26.1% and 29%, respectively), and no differences were observed by race. The 1‐year, 3‐year, and 5‐year survival estimates were 53.1%, 33.8%, and 29%, respectively. Survival improved in most states. Survival by stage was 64% (local), 28.2% (regional), and 5.3% (distant).
CONCLUSIONS
The current results indicate high fatality for stomach cancer, especially soon after diagnosis. Although improvements in stomach cancer survival were observed, survival remained relatively low for both blacks and whites. Primary prevention through the control of well‐established risk factors would be expected to have the greatest impact on further reducing deaths from stomach cancer. Cancer 2017;123:4994‐5013. Published 2017. This article is a U.S. Government work and is in the public domain in the USA.
In this analysis of stomach cancer survival for 80% of the US population, age‐standardized 5‐year net survival remains low, but it improved slightly between 2001‐2003 and 2004‐2009. The differences between blacks and whites in pooled 5‐year survival for 37 states combined are not large. Primary prevention through control of well‐established risk factors will be an important public health action for the longer term.
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