OBJECTIVE: Within the Paediatric Rare Tumours Network-European Registry (PARTNER) project, we aimed to evaluate the situation on the registration and management of paediatric patients affected by very rare tumours (VRT) in the European low health expenditure average rates (LHEAR) countries.
METHODS: A survey regarding infrastructure, organisation, and clinical decision-making information on VRT was designed. This survey was distributed to the representatives of LHEAR countries involved in the activities of the PARTNER Work Package 7.
RESULTS: Eighteen answers from 17 countries were collected regarding the national organisation, methods of registration of VRT cases, the availability of medical experts in VRT, the access to updated diagnostic and therapeutic procedures (such as proton therapy, immunotherapy and, targeted therapies), and research on paediatric VRT. A high variability in the registration and management of patients with VRT has been observed with additional wide inequalities in pathology review, uniformity of clinical decisions, availability of selected procedures, and diagnostic and research tools.
CONCLUSIONS: In the majority of LHEAR countries, no clinical or research structures have been implemented for children and adolescents with VRT. Therefore, VRT still have an orphan status in these countries. These significant differences on the technology access and use between European regions need to be addressed.

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.

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.

BACKGROUND: 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.
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.

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.

UNASSIGNED: 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.
UNASSIGNED: 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.
UNASSIGNED: 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.
UNASSIGNED: 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.
UNASSIGNED: 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.

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.

OBJECTIVE: 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.
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.
CONCLUSIONS: 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.

UNASSIGNED: Rare cancers are difficult to study owing to their infrequent diagnosis. Using aggregate incidence data from population-based cancer registries in Europe, the Surveillance of Rare Cancers in Europe project compiled a list of clinically relevant, topography and morphology defined rare cancers operationally defined as having a crude annual incidence rate of <6 per 100,000 persons. In 2020, this list of rare cancers was updated. The objective of this study was to assess the utility of a rare cancer recode variable for use in the Cancer in North America (CiNA) dataset and to provide a first look at the burden of rare cancers in Canada and the United States.
UNASSIGNED: Data were obtained from 62 registries in Canada and the United States that met North American Association of Central Cancer Registries (NAACCR) high-quality data standards. The list of rare cancers was programmed as a Rare Cancer Classification variable within SEER*Stat. SEER*Stat was used to estimate case counts and crude and age-specific incidence rates per 100,000 for cancers diagnosed 2015-2019 by age at diagnosis, country, and country-specific geographic regions in Canada and the United States, and by race/ethnicity in the United States.
UNASSIGNED: In Canada and the United States, 21% and 22% of all invasive cancers were classified as rare, respectively. The percentage of rare cancers ranged between 18% to 21% across geographic regions in Canada and the United States. Children (aged 0-14 years) had the highest percentage and lowest incidence rates of rare cancers. The percentage of rare cancers decreased, and incidence increased with increasing age. In the United States, Hispanics had the highest percentage (27%) and non-Hispanic Whites and non-Hispanic Blacks the lowest percentage (21%) of rare cancers.
UNASSIGNED: While individual rare cancers are infrequently diagnosed, in aggregate, they account for a substantial percentage of all cancers diagnosed in the population and pose a substantial public health burden. We report variations in percentage of rare cancers by age, and race/ethnicity (United States only). Such variations in the burden of these cancers may suggest possible areas for public health research.

BACKGROUND: 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.