Together4RD position statement on collaboration between European reference networks and industry.

Notwithstanding two decades of policy and legislation in Europe, aimed to foster research and development in rare conditions, only 5-6% of rare diseases have dedicated treatments. Given with the huge number of conditions classed as rare (which is increasing all the time), this equates to major unmet need for patients (over 30 million in the EU alone). Worryingly, the pace of Research and Innovation in Europe is lagging behind other regions of the world, and a seismic shift in the way in which research is planned and delivered is required, in order to remain competitive and-most importantly-bring meaningful, disease-altering treatments to those who desperately need them. The European Reference Networks (ERNs), launched in 2017, hold major potential to alleviate many of these challenges, and more, but only if adequately supported (financially, technically, and via robust policies and infrastructure) to realise that potential: and even then, only if able to forge robust collaborations harnessing the expertise, resources, knowledge and data of all stakeholders involved in rare disease, including Industry. To-date, however, ERN-Industry interactions have been largely limited, for a range of reasons (concerning barriers both tangible and perceived). This Position Statement analyses these barriers, and explains how Together4RD is seeking to move the needle here, by learning from case studies, exploring frameworks for collaboration, and launching pilots to explore how best to plan and deliver multistakeholder interactions addressing real research needs.

Ocular adverse effects of anti-cancer chemotherapy.

Cancer ranks as the second leading cause of mortality in Europe, following cardiovascular diseases. Every year, 2.6 million people are diagnosed with this disease, and 1.2 million die. It has an impact not only on individual health but also on society and the economy. The survival rate has improved with the introduction of new diagnostic methods and anti-cancer chemotherapy. While more aggressive chemotherapeutic regimens and combination therapies have demonstrated efficacy against cancer cells, they also have detrimental effects on normal cells, leading to systemic and ocular adverse reactions associated with cytotoxicity, inflammation, and neurotoxicity. Consequently, we have an increased survival rate, but the appearance of these ocular adverse effects decreases the quality of life. Ocular toxicity induced by chemotherapeutic agents is often underestimated. While prevention may not be possible, proper management by an ophthalmologist, an integral part of the oncology patient's medical team, is crucial. The ophthalmologist should assess the patient before initiating chemotherapeutic treatment and continue monitoring throughout to identify any adverse ocular reactions resulting from the systemic chemotherapy. This article aimed to briefly highlight the adverse reactions occurring at the ocular surface in patients undergoing chemotherapeutic treatment. Fortunately, these ocular side effects are limited only to the period in which the chemotherapeutic treatment is done, with most of them disappearing a few weeks after stopping the treatment.

ORPHAcodes use for the coding of rare diseases: comparison of the accuracy and cross country comparability.

BACKGROUND: Estimates of rare disease (RD) population impact in terms of number of affected patients and accurate disease definition is hampered by their under-representation in current coding systems. This study tested the use of a specific RD codification system (ORPHAcodes) in five European countries/regions (Czech Republic, Malta, Romania, Spain, Veneto region-Italy) across different data sources over the period January 2019-September 2021. RESULTS: Overall, 3133 ORPHAcodes were used to describe RD diagnoses, mainly corresponding to the disease/subtype of disease aggregation level of the Orphanet classification (82.2%). More than half of the ORPHAcodes (53.6%) described diseases having a very low prevalence (< 1 case per million), and most commonly captured rare developmental defects during embryogenesis (31.3%) and rare neurological diseases (17.6%). ORPHAcodes described disease entities more precisely than corresponding ICD-10 codes in 83.4% of cases. CONCLUSIONS: ORPHAcodes were found to be a versatile resource for the coding of RD, able to assure easiness of use and inter-country comparability across population and hospital databases. Future research on the impact of ORPHAcoding as to the impact of numbers of RD patients with improved coding in health information systems is needed to inform on the real magnitude of this public health issue.

The first report on Hepatozoon canis in dogs and wolves in Poland: clinical and epidemiological features.

BACKGROUND: Canine hepatozoonosis caused by Hepatozoon canis is a common infection in dogs, with frequent case reports from the Mediterranean region and more recently from several Central European countries, such as Hungary and Germany. Despite the high prevalence of H. canis in red foxes, no infections have been reported to date in dogs in Poland. We describe here the first autochthonous cases of H. canis infection in dogs, including their clinical features, and report the prevalence of H. canis in grey wolves from different regions of Poland. METHODS: Thin smears prepared from blood samples collected from dogs were evaluated by microscopic examination. A total of 60 wolves and 47 dogs were tested. Infections were confirmed by PCR and sequencing. RESULTS: Gamonts of H. canis were found in > 50% of the neutrophils of two dogs and in < 10% of the neutrophils in another five dogs. Molecular typing by PCR sequencing of the 18S ribosomal RNA gene fragment confirmed infections in 11 dogs from different regions of Poland, in 2.7% of dogs attending veterinary practices in central Poland and in 35% of wolves from various geographical regions of Poland. Clinical features manifested mostly in older dogs, and the most common signs were anaemia and apathy. Young dogs usually remained asymptomatic. CONCLUSIONS: This is the first report of H. canis infection in dogs and wolves in Poland. Although the exact vector of the parasite is not known, veterinary practitioners should be aware of this new parasitosis and should consider appropriate diagnostics to confirm/exclude this infection. Further studies are needed to understand the transmission routes of H. canis in domestic and wild canids in Poland.

MEDICAL ISSUES AND PEOPLE IN VIEW OF THE SEVENTEENTH-CENTURY LATIN WORKS PUBLISHED IN KRAKÓW

This paper investigates the Latin works dealing with medicine and physicians, published in seventeenth-century Kraków. The main purpose of the research is to present the leading persons of academic medicine working in those times in this city and to follow through the selected works, which constitute a part of Neo-Latin literature in the Polish-Lithuanian Commonwealth. The scholastic way of the discourse did not always mean overuse of the authorities, however both ancient and modern were being evoked. By presenting the segment of the medical milieu of seventeenth-century Kraków, namely those academics who published their works there, the author claims that sometimes the neglected Latin editorial production of the Cracovian printing shops is an important part not only for the history of the development of medicine in this region of Europe but also for the cultural heritage of the state's community. Although the Latin language might enable the broader extent of these medical works, most of them were addressed to a particular scientific public. The essay shows that many medical doctors were known for their activities in various fields, such as poetry and city management, and that the panegyrical works may serve as one of the sources of recognition of their biographies and medical output as well.

Age-Related Macular Degeneration in an Ageing Society - Current Epidemiological Research. / Altersbedingte Makuladegeneration in einer alternden Gesellschaft ­ aktuelle epidemiologische Forschungsansätze und Erkenntnisse.

Epidemiological studies on age-related macular degeneration (AMD) provide crucial data on the frequency of early and late forms as well as associated risk factors. The increasing number of population-based cross-sectional and longitudinal cohort studies in Germany and Europe with published data is making prevalence and incidence estimators for AMD more robust, although they show mostly method-related fluctuations. This review article brings together the latest published epidemiological measures for AMD from Germany and Central as well as Western Europe. Based on this data and population figures for Germany and Europe, prevalence is projected, and future trends are forecasted. The epidemiological evidence for AMD-associated risk factors is also improving, especially through meta-analyses within large consortia with correspondingly high case numbers. This review article summarizes the latest findings and resulting recommendations for prevention approaches. Additionally, it discusses treatment options and future challenges.

Unmet Psychosocial Needs of Health Care Professionals in Europe During the COVID-19 Pandemic: Mixed Methods Approach.

BACKGROUND: The COVID-19 pandemic severely affected everyday life and working conditions for most Europeans, particularly health care professionals (HCPs). Over the past 3 years, various policies have been implemented in various European countries. Studies have reported on the worsening of mental health, work-related stress, and helpful coping strategies. However, having a closer look is still necessary to gain more information on the psychosocial stressors and unmet needs of HCPs as well as nonmedical staff. OBJECTIVE: This study aimed to obtain quantitative information on job-related stressors of physicians and nurses and the coping strategies of HCPs and nonmedical staff at 2 periods of the COVID-19 pandemic. By further analyzing qualitative comments, we wanted to gain more information on the psychosocial stressors and unmet needs of HCPs as well as nonmedical staff on different levels of experience. METHODS: A cross-sectional survey was conducted at 2 time points during the COVID-19 pandemic in several European countries. The first study period (T1) lasted between April 1 and June 20, 2020, and the second study period (T2) lasted between November 25, 2021, and February 28, 2022. On a quantitative level, we used a questionnaire on stressors for physicians and nurses and a questionnaire on coping strategies for HCPs and nonmedical staff. Quantitative data were descriptively analyzed for mean values and differences in stressors and coping strategies. Qualitative data of free-text boxes of HCPs and nonmedical staff were analyzed via thematic analysis to explore the experiences of the individuals. RESULTS: T1 comprised 609 participants, and T2 comprised 1398 participants. Overall, 296 participants made 438 qualitative comments. The uncertainty about when the pandemic would be controlled (T1: mean 2.28, SD 0.85; T2: mean 2.08, SD 0.90) and the fear of infecting the family (T1: mean 2.26, SD 0.98; T2: mean 2.02, SD 1.02) were the most severe stressors identified by physicians and nurses in both periods. Overall, the use of protective measures (T1: mean 2.66, SD 0.60; T2: mean 2.66, SD 0.60) and acquiring information about COVID-19 (T1: mean 2.29, SD 0.82; T2: mean 1.99, SD 0.89) were identified as the most common coping strategies for the entire study population. Using thematic analysis, we identified 8 themes of personal experiences on the micro, meso, and macro levels. Measures, working conditions, feelings and emotions, and social climate were frequently mentioned topics of the participants. In T1, feelings of isolation and uncertainty were prominent. In T2, feelings of exhaustion were expressed and vaccination was frequently discussed. Moreover, unmet psychosocial needs were identified. CONCLUSIONS: There is a need for improvement in pandemic preparedness. Targeted vocational education measures and setting up of web-based mental health support could be useful to bridge gaps in psychosocial support needs in future crises.

A standardised protocol for relative SARS-CoV-2 variant severity assessment, applied to Omicron BA.1 and Delta in six European countries, October 2021 to February 2022.

Several SARS-CoV-2 variants that evolved during the COVID-19 pandemic have appeared to differ in severity, based on analyses of single-country datasets. With decreased testing and sequencing, international collaborative studies will become increasingly important for timely assessment of the severity of new variants. Therefore, a joint WHO Regional Office for Europe and ECDC working group was formed to produce and pilot a standardised study protocol to estimate relative case-severity of SARS-CoV-2 variants during periods when two variants were co-circulating. The study protocol and its associated statistical analysis code was applied by investigators in Denmark, England, Luxembourg, Norway, Portugal and Scotland to assess the severity of cases with the Omicron BA.1 virus variant relative to Delta. After pooling estimates using meta-analysis methods (random effects estimates), the risk of hospital admission (adjusted hazard ratio (aHR) = 0.41; 95% confidence interval (CI): 0.31-0.54), admission to intensive care unit (aHR = 0.12; 95% CI: 0.05-0.27) and death (aHR = 0.31; 95% CI: 0.28-0.35) was lower for Omicron BA.1 compared with Delta cases. The aHRs varied by age group and vaccination status. In conclusion, this study demonstrates the feasibility of conducting variant severity analyses in a multinational collaborative framework and adds evidence for the reduced severity of the Omicron BA.1 variant.

Increase in bloodstream infections caused by emm1 group A Streptococcus correlates with emergence of toxigenic M1UK, Belgium, May 2022 to August 2023.

Many European countries have recently reported upsurges in invasive group A Streptococcus (iGAS) infections, mainly caused by emm1 Streptococcus pyogenes, specifically the toxigenic M1UK lineage. We present the epidemiology of emm1 causing iGAS in Belgium during 2018-August 2023, and describe an emergence of the toxigenic M1UK lineage in Belgium in mid-2022 that was observed as an increase in bloodstream infections caused by emm1 S. pyogenes that continued into 2023.

Field Epidemiology and Public Health Microbiology training: capturing the alumni perspectives of the training's impact.

We present the findings from the European Programme for Intervention Epidemiology Training (EPIET) Alumni Network (EAN) Member Survey conducted in October to December 2021. The EAN consists of field epidemiologists (EPIET) and public health microbiologists (European Public Health Microbiology Training Programme (EUPHEM)) who stay connected after their 2-year fellowship. This active alumni network provides opportunities for career development, mentorship, knowledge exchange and sharing of best practices for community members, affiliated professionals and public health organisations in Europe. Overall, 281 of 732 members participated in the survey. Of the 192 European fellowship alumni respondents, 173 (90%) indicated that skills and competencies acquired during their fellowship improved performance in their role compared with their abilities before the fellowship. Reported skills and competencies that could be further strengthened included data management/analysis, communication, mathematical modelling and leadership/team management. The EAN Member Survey provides valuable feedback to the EAN, as well as the fellowship programme offices at the European Centre for Disease Prevention and Control (ECDC) and affiliated field epidemiology programmes. The COVID-19 pandemic was a stark reminder of how essential cross-border collaborations are for continued European health security. Maintaining and increasing the professional, well-trained workforce remains crucial for optimal response to infectious diseases and protection of public health.

Health literacy education at the time of COVID-19: development and piloting of an educational programme for university health professional students in 4 European countries.

BACKGROUND: Health literacy has a strong influence on individual health outcomes and the sustainability of healthcare systems. Healthcare professionals often overestimate patients' health literacy levels and lack adequate competencies to address limited health literacy effectively. Therefore, promoting understanding through effective health communication between professionals and citizens is becoming increasingly important. Although health literacy has recently gained more attention, health literacy educational programmes targeting future healthcare professionals are still scarce, especially in Europe. This study describes the piloting process of a pan-European health literacy educational programme and shows how the educational material is being used during time of crisis such as the COVID-19 pandemic. METHODS: The educational programme was developed through the definition of an educational philosophy and iterative co-creation processes consisting of stakeholders' consultations, material development and pilots with students. The evaluation was carried out in Italy through four pilot tests involving 107 students of health-related degrees. An evaluation questionnaire and a pre-post test were developed and used to collect students' and educators' feedback (quantitative and qualitative) and assess changes in health literacy awareness, respectively. Three additional pilots were organized in Italy and Germany mostly during the COVID-19 pandemic to evaluate the feasibility of the educational programme through online and hybrid learning, respectively. RESULTS: The pilots received positive feedback from both students and educators. Students were highly satisfied with the courses, reported their relevance for their future profession and appreciated the interactive teaching methods. The pre-post test showed a significant improvement in health literacy awareness after the training. Educators reported the adequacy and flexibility of the training material, the ease of transferability of the content of the lessons into practice, and the validity of the tested options to integrate the educational programme into the curricula. CONCLUSIONS: Our comprehensive, evidence-based educational programme contributes to addressing the existing challenges in Europe, and its flexibility allows for easy integration in the curricula, through different options, hence supporting a widespread uptake in the European Union and maybe beyond. Health literacy education is a useful tool to improve citizens' access to healthcare information and services, achieve better health outcomes and support healthcare systems' sustainability.

Preparation and Evaluation of a Professional Development Series for Early-Career Oncology Nurses in Europe.

The European Oncology Nursing Society Nightingale Challenge was a professional development program delivered via seven one-hour webinars focusing on leadership, career development, and managing burnout. A total of 151 partici.

Recovery of plastic waste through its thermochemical degradation: a review.

The demand to produce plastic has increased yearly; only in 2020, there was a production of approximately 368 million tons worldwide. According to Plastics Europe, from 2016 to 2018, a total of 29.1 Mt of plastic waste was generated, and 24% of this ended up in a landfill, generating problems due to accumulation. The increase in the demand for plastics has begun to contribute to the shortage of oil sources, a non-renewable resource. On the other hand, various researchers have reported effects on human health such as neurological damage, cancer in the nasal cavities, prostate, and ovarian cancer, and in animal species, destruction of the digestive and respiratory tracts due to the consumption of microplastics in food. Due to these reasons, various solutions have been proposed for recovering and recycling plastic waste. One of the most promising technologies is thermal and catalytic degradation, known as pyrolysis. This technology allows the recovery of chemical compounds of high energy value. In this work, the various environmental and social impacts caused by plastic are discussed. Worldwide consumption data is provided by sector and type of plastic, and the different routes of thermal degradation for each type of thermoplastic are shown.

Addressing violence against children: A systematic review on interventions to accelerate the achievement of the UN sustainable development goal in Europe and Africa.

BACKGROUND: Violence against children (VAC) is a global public health issue. In the context of limited resources, the United Nations Development Programme has coined the concept of a Sustainable Development Goals (SDG) accelerator for preventing and responding to VAC. An 'accelerator' is a provision that simultaneously leads to progress across multiple SDGs targets and goals. OBJECTIVES: This systematic review synthesizes the literature on violence prevention evaluation studies using robust methods according to the SDG accelerator framework for children aged 0-18 in Western Europe and Central and West Africa. It also provides a lens for analyzing research inequities between the global North and South, examining the challenges and differences undermining knowledge production across regions, particularly in research output. METHOD: We systematically searched 30 electronic databases and grey literature in English and French. The quality of included studies was assessed using the Cochrane Risk of Bias tool. RESULTS: Nine evaluation studies related to four SDG goals and ten targets were included in the analysis. As a result, no intervention was identified as an accelerator for children in West and Central Africa. In contrast, three promising interventions were identified as accelerators in Western Europe. Two school-based interventions reduce bullying, depression, and substance abuse and improve psychological well-being; and one home-based intervention reduces child abuse, the severity of neglect, and mental health problems and improves school attendance. Moreover, this review also uncovered a lack of research from the Global South that points to serious disadvantages for authors and institutions and global violence prevention efforts, as it hinders the flow of knowledge and innovative practices. CONCLUSIONS: The results highlight the need for future VAC prevention trials to integrate the SDG accelerators concept further. Additionally, more effort should be made to support scholars in the global South to address knowledge inequities and to enhance understanding of how accelerators work in different field settings and conditions. This effort will ensure that interventions accelerate SDG goals and impact the world's most vulnerable children.

Non-MHC immunity genes do not affect parasite load in European invasive populations of common raccoon.

Understanding the evolutionary mechanisms behind invasion success enables predicting which alien species and populations are the most predisposed to become invasive. Parasites may mediate the success of biological invasions through their effect on host fitness. The evolution of increased competitive ability (EICA) hypothesis assumes that escape from parasites during the invasion process allows introduced species to decrease investment in immunity and allocate resources to dispersal and reproduction. Consequently, the selective pressure of parasites on host species in the invasive range should be relaxed. We used the case of the raccoon Procyon lotor invasion in Europe to investigate the effect of gastrointestinal pathogen pressure on non-MHC immune genetic diversity of newly established invasive populations. Despite distinct differences in parasite prevalence between analysed populations, we detected only marginal associations between two analysed SNPs and infection intensity. We argue that the differences in parasite prevalence are better explained by detected earlier associations with specific MHC-DRB alleles. While the escape from native parasites seems to allow decreased investment in overall immunity, which relaxes selective pressure imposed on immune genes, a wide range of MHC variants maintained in the invasive range may protect from newly encountered parasites.