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Background: In 2017, the European Commission launched 24 European Reference Networks (ERNs). ERN eUROGEN is the network for urorectogenital diseases and complex conditions, and started with 29 full member healthcare providers (HCPs) in 11 countries. It then covered 19 different disease areas distributed over three work -streams (WSs). Objective: To provide an overview and identify challenges in data collection at European level of the ERN eUROGEN patient population treated by HCPs in the network. Design, setting, and participants: A retrospective cohort study was conducted of the 29 HCPs who were full members between 2013 and 2019. Outcome measurements and statistical analysis: Data were extracted from the original HCP applications and the ERN continuous monitoring system. Patient volumes, new patient numbers, and procedures were compared between different WSs, countries, and HCPs. Discrepancies between monitoring and application data were identified. Results and limitations: Between 2013 and 2019, 122 040 patients required long-term care within the 29 HCPs. The volume of patients treated and procedures undertaken per year increased over time. Large discrepancies were found between patient numbers contained in the application forms and those reported in the continuous monitoring system (0-1357% deviation). Conclusions: Patient numbers and procedures increased across ERN eUROGEN HCPs. Reliable data extraction appeared challenging, illustrated by the patient volume dis-crepancies between application forms and the continuous monitoring data. Improved disease definitions, re-evaluation of affiliated HCPs, and valid data extraction are needed for future improvements. Patient summary: We analysed the patient population with rare urorectogenital dis-eases or complex conditions within the ERN eUROGEN network between 2013 and 2019. Clinical activity was found to increase, but differences in patient numbers were evident between healthcare providers. In order to acquire valid patient numbers, both improved definitions of diagnostic codes and greater insight into the data-gathering process are required. (c) 2021 The Authors. Published by Elsevier B.V. on behalf of European Association of Urology. This is an open access article under the CC BY license (http://creativecommons. org/licenses/by/4.0/).

In the first results from an ongoing global cancer screening data repository, screening program organization was better overall in Europe compared to other continents; however, there were substantial gaps in implementation across both high- and low-resource settings. The CanScreen5 project is a global cancer screening data repository that aims to report the status and performance of breast, cervical and colorectal cancer screening programs using a harmonized set of criteria and indicators. Data collected mainly from the Ministry of Health in each country underwent quality validation and ultimately became publicly available through a Web-based portal. Until September 2022, 84 participating countries reported data for breast (n = 57), cervical (n = 75) or colorectal (n = 51) cancer screening programs in the repository. Substantial heterogeneity was observed regarding program organization and performance. Reported screening coverage ranged from 1.7% (Bangladesh) to 85.5% (England, United Kingdom) for breast cancer, from 2.1% (Cote d'Ivoire) to 86.3% (Sweden) for cervical cancer, and from 0.6% (Hungary) to 64.5% (the Netherlands) for colorectal cancer screening programs. Large variability was observed regarding compliance to further assessment of screening programs and detection rates reported for precancers and cancers. A concern is lack of data to estimate performance indicators across the screening continuum. This underscores the need for programs to incorporate quality assurance protocols supported by robust information systems. Program organization requires improvement in resource-limited settings, where screening is likely to be resource-stratified and tailored to country-specific situations.

More than 50% of all gynecologic tumors can be classified as rare (defined as an incidence of ≤6 per 100,000 women) and usually have a poor prognosis owing to delayed diagnosis and treatment. In contrast to almost all other common solid tumors, the treatment of rare gynecologic tumors (RGT) is often based on retrospective studies, expert opinion, or extrapolation from other tumor sites with similar histology, leading to difficulty in developing guidelines for clinical practice. Currently, gynecologic cancer research, due to distinct scientific and technological challenges, is lagging behind. Moreover, the overall efforts for addressing these challenges are fragmented across different European countries and indeed, worldwide. The GYNOCARE, COST Action CA18117 (European Network for Gynecological Rare Cancer Research) programme aims to address these challenges by creating a unique network between key stakeholders covering distinct domains from concept to cure: basic research on RGT, biobanking, bridging with industry, and setting up the legal and regulatory requirements for international innovative clinical trials. On this basis, members of this COST Action, (Working Group 1, “Basic and Translational Research on Rare Gynecological Cancer”) have decided to focus their future efforts on the development of new approaches to improve the diagnosis and treatment of RGT. Here, we provide a brief overview of the current state-of-the-art and describe the goals of this COST Action and its future challenges with the aim to stimulate discussion and promote synergy across scientists engaged in the fight against this rare cancer worldwide. publishersversion published

Early detection of cancer can significantly reduce mortality and improve the quality of life of persons with cancer. In this article we describe the three national screening programmes that have been introduced in Malta since 2009 and that are based on guidelines supported by the European Commission. Screening for breast cancer was the first national screening programme implemented in Malta. After several years of roll-out and gradual expansion of the service, this programme is now reaching the targets of the European Commission on Breast Cancer (ECIBC) Guideline Group in terms of target population and screening frequency. Colorectal Cancer (CRC) Screening was the second programme to be introduced in 2013 while Cervical Cancer Screening was launched in 2016. These programmes are being gradually scaled up, and there is continuous investment in new technologies and human resources. Low participation rates remain a challenge, however improvements have been achieved following awareness campaigns and evaluation of the invitation protocols., peer-reviewed

PH.D., Healthcare organisations are seeking to advance safety and quality in a changing environment. They are also facing growing demands and obligations to identify and spread the use of best practices in the services that they provide. However, it has been shown that the dissemination and adoption of best practices can encounter several difficulties such as resistance to adjust to new clinical, organisational and interpersonal routines and the need to modify procedures to be context sensitive and applicable. On the other hand, numerous examples abound in which individuals and teams in healthcare organisations were shown to exhibit creativity and leadership and consequently the capability to improve quality and engender organisational growth. This study researched the organisational dynamics that either foster or inhibit the system change needed for the ongoing organisational development of the major acute general public hospital in Malta: Mater Dei Hospital (MDH). The researcher sought to elucidate whether and to what extent MDH is adopting and applying appropriate learning practices so that knowledge acquired and generated within the organisation is retained, disseminated, managed and applied. Malta is the main island of a small archipelago in the Mediterranean with a total population of just over 430,000. This study utilized two major research methods: an action research arm and an in-depth interview approach. The former was achieved through the documentation and interpretation of a practitioner-researcher experience working within a multi-disciplinary hospital group. The Patient Safety and Quality Improvement Team (PaSQIT) was set up to promote and implement projects that raise the profile of and increase the standards for patient safety and quality care at MDH. Data collection and analysis were guided by the grounded theory paradigm to ‘ground’ the research process and product in the data. These processes were operated within a constructivist and informed grounded theory approach, wherein the researcher is allowed to be mindful and sensitive to the extant literature and to critically adopt pre-existing knowledge in the analysis judged in terms of relevance, fit, and utility. Another extensive literature review was conducted nearer to the end of the data collection and analysis processes to elicit existent knowledge that can challenge or corroborate the original findings of this research. This research affirmed the high potential and capabilities of the hospital workforce. This potential is nonetheless susceptible to be affected and gradually transformed by identified organisational and external forces into a workforce that is highly territorial, cynical and showing lack of ‘ownership’ of the organisational vision and objectives. The results led to the generation of a theoretical framework that depicts a vicious circle that needs to be broken to allow the desired organisational development and learning. The report presents a number of recommendations to help counteract these forces and break the cycle. The theoretical framework that was generated from the findings of this research is the key outcome of this study. This framework provides a visualization of the identified and interconnected enabling and hindering factors and a practical schematic on which corrective activities can be designed, implemented and monitored. Although this framework has a specific relevance for MDH, this additional knowledge can be used and inspire other organisations operating within comparable conditions. Finally, this research can be a source for stimulation for future studies that compare and follow-up these findings over time at MDH or in organisations working in similar, different or contrasting situations., N/A

Cancer of the breast is the most common malignancy and the leading cause of cancer-related mortality in women. Over the past 20 years, mortality from breast cancer in Malta has shown a steady decline and survival from this disease has registered marked improvement, despite the fact that incidence continues to increase. Increased awareness as well as the development of specialized breast care health services have resulted in positive outcomes, with local mortality rates approaching that of the EU-15 average., peer-reviewed

The incidence and mortality of uterine cervical cancer in the Maltese Islands has remained relatively constant in medical records of the last few decades. The aim of this study was to determine the cervical cancer screening history and other characteristics of the invasive cervical cancer cases diagnosed in Malta between 1992 and 2002, from a review of their medical records. Only 5% of the cases reviewed had had regular cervical smears prior to the diagnosis of the invasive lesion. Well organised national cancer screening programmes overseas indicate that if less than 70% of the target population (ages 20 to 65 for cervix) is regularly screened, the incidence and mortality will not decrease.1 In Malta, cervical screening is opportunistic and the percentage and sectors of the target population being screened is unknown. A national study is needed to quantify the number of women undergoing cervical screening and to assess how much of the relevant target population is being screened., peer-reviewed