Health systems sustainability in the framework of rare diseases actions. Actions on educational programmes and training for professionals and patients

Protection of early development contributes to health of next generations. Congenital anomalies (and other adverse reproductive outcomes) are an important public health issue and early indicator of public health risks, as early development is influenced by many risk factors (e.g., nutrition, lifestyles, pollution, infections, medications, etc). Effective primary prevention requires an integrated “One Health” approach, linking knowledge  and action. This requires surveillance of health events and potential health-damaging factors, science-based risk analysis, citizens’ empowerment and education of health professionals. From the policy standpoint, joint budgeting mechanisms are needed to sustain with equity intersectoral actions (involving policy domains of health, social affairs, education, agriculture and environment). States should devote resources to strengthen registries and systematic data collection for surveillance of congenital anomalies, to better inform national prevention strategies. Investing in primary prevention based on scientific evidence is essential to support sustainable and resilient health systems and sustainable development of the society

Punta Querandí: disputas por el espacio entre las urbanizaciones cerradas y los movimientos sociales

El presente informe es el resultado del trabajo llevado a cabo por los alumnos del sexto año de la Escuela Secundaria del Colegio San Simón, de la ciudad de La Plata, en el marco de la asignatura de la Orientación en Ciencias Sociales denominada Proyectos de Investigación en Ciencias Sociales, durante el ciclo lectivo 2012. Se estudió el conflicto alrededor del paraje denominado Punta Querandí, ubicado entre los partidos de Tigre y Escobar, para abordar la problemática de las disputas por el espacio entre las urbanizaciones cerradas y los movimientos sociales. Se da cuenta de las sucesivas etapas de elaboración del diseño de investigación, la realización del trabajo de campo y las conclusiones alcanzadas al finalizar el año lectivo.Facultad de Humanidades y Ciencias de la Educació

Acute Delta Hepatitis in Italy spanning three decades (1991–2019): Evidence for the effectiveness of the hepatitis B vaccination campaign

Updated incidence data of acute Delta virus hepatitis (HDV) are lacking worldwide. Our aim was to evaluate incidence of and risk factors for acute HDV in Italy after the introduction of the compulsory vaccination against hepatitis B virus (HBV) in 1991. Data were obtained from the National Surveillance System of acute viral hepatitis (SEIEVA). Independent predictors of HDV were assessed by logistic-regression analysis. The incidence of acute HDV per 1-million population declined from 3.2 cases in 1987 to 0.04 in 2019, parallel to that of acute HBV per 100,000 from 10.0 to 0.39 cases during the same period. The median age of cases increased from 27 years in the decade 1991-1999 to 44 years in the decade 2010-2019 (p < .001). Over the same period, the male/female ratio decreased from 3.8 to 2.1, the proportion of coinfections increased from 55% to 75% (p = .003) and that of HBsAg positive acute hepatitis tested for by IgM anti-HDV linearly decreased from 50.1% to 34.1% (p < .001). People born abroad accounted for 24.6% of cases in 2004-2010 and 32.1% in 2011-2019. In the period 2010-2019, risky sexual behaviour (O.R. 4.2; 95%CI: 1.4-12.8) was the sole independent predictor of acute HDV; conversely intravenous drug use was no longer associated (O.R. 1.25; 95%CI: 0.15-10.22) with this. In conclusion, HBV vaccination was an effective measure to control acute HDV. Intravenous drug use is no longer an efficient mode of HDV spread. Testing for IgM-anti HDV is a grey area requiring alert. Acute HDV in foreigners should be monitored in the years to come

Cancer data quality and harmonization in Europe: the experience of the BENCHISTA Project – international benchmarking of childhood cancer survival by stage

IntroductionVariation in stage at diagnosis of childhood cancers (CC) may explain differences in survival rates observed across geographical regions. The BENCHISTA project aims to understand these differences and to encourage the application of the Toronto Staging Guidelines (TG) by Population-Based Cancer Registries (PBCRs) to the most common solid paediatric cancers.MethodsPBCRs within and outside Europe were invited to participate and identify all cases of Neuroblastoma, Wilms Tumour, Medulloblastoma, Ewing Sarcoma, Rhabdomyosarcoma and Osteosarcoma diagnosed in a consecutive three-year period (2014-2017) and apply TG at diagnosis. Other non-stage prognostic factors, treatment, progression/recurrence, and cause of death information were collected as optional variables. A minimum of three-year follow-up was required. To standardise TG application by PBCRs, on-line workshops led by six tumour-specific clinical experts were held. To understand the role of data availability and quality, a survey focused on data collection/sharing processes and a quality assurance exercise were generated. To support data harmonization and query resolution a dedicated email and a question-and-answers bank were created.Results67 PBCRs from 28 countries participated and provided a maximally de-personalized, patient-level dataset. For 26 PBCRs, data format and ethical approval obtained by the two sponsoring institutions (UCL and INT) was sufficient for data sharing. 41 participating PBCRs required a Data Transfer Agreement (DTA) to comply with data protection regulations. Due to heterogeneity found in legal aspects, 18 months were spent on finalizing the DTA. The data collection survey was answered by 68 respondents from 63 PBCRs; 44% of them confirmed the ability to re-consult a clinician in cases where stage ascertainment was difficult/uncertain. Of the total participating PBCRs, 75% completed the staging quality assurance exercise, with a median correct answer proportion of 92% [range: 70% (rhabdomyosarcoma) to 100% (Wilms tumour)].ConclusionDifferences in interpretation and processes required to harmonize general data protection regulations across countries were encountered causing delays in data transfer. Despite challenges, the BENCHISTA Project has established a large collaboration between PBCRs and clinicians to collect detailed and standardised TG at a population-level enhancing the understanding of the reasons for variation in overall survival rates for CC, stimulate research and improve national/regional child health plans

3D in the Carare Project : Providing Europeana with 3D Content for the Archaeological and Architectural Heritage: the Pompeii Case Study

CARARE is a best practice network funded by the EU ICT Policy Support Programme. It is aimed at establishing a best practice network of heritage agencies, archaeological organisations and research institutions to establish an aggregation service for Europeana for archaeological and architectural digital content, including images, texts and 3D objects. CARARE is particularly focused on recommendations for metadata schemas dedicated to archaeological and architectural heritage and on solutions for the publication of 3D and Virtual Reality content. This paper describes the recommendations which have been made by the project for publishing 3D objects online in easily accessible formats such as 3D PDF with the metadata necessary for discovery in Europeana. It is illustrated by the contribution of the Scuola Normale Superiore and its work in preparing 3D representations of Pompeii monuments for publication through European

CARARE: D5.5: Three Documented 3D/VR Case Studies

This deliverable comprises three Case Studies describing the preparation of 3D content by partners in the CARARE Project for provision to Europeana and its end-users. The deliverable is presented as a portfolio of documents comprising of this executive summary, the three case studies and four examples of 3D-PDFs. This approach allows each Case Study to be published separately on the CARARE project website in an easily readable format for members of the best practice network. Each Case Study consists of: An abstract and keywords A short introduction Description of the collections Description of the process Mapping Conclusions Acknowledgements References The Case Studies describe the content of the 3D models, the processes used and the challenges faced by each organisation in creating 3D documents suitable for online publication from the original 3D formats. All of the Case Studies make use of the extensive work carried out in Work Package 5 which has been documented in two principle public deliverables: D5.1 Functional specification of requirements for preparing 3D/VR for Europeana - Daniel Pletinckx (Visual Dimension bvba) and David Haskiya (EDLF) D5.4 3D/VR Training materials - Daniel Pletinckx (Visual Dimension bvba) and Paola Ronzino (STARC)

PARSEME corpora annotated for verbal multiword expressions (version 1.3)

This multilingual resource contains corpora in which verbal MWEs have been manually annotated. VMWEs include idioms (let the cat out of the bag), light-verb constructions (make a decision), verb-particle constructions (give up), inherently reflexive verbs (help oneself), and multi-verb constructions (make do). This is the first release of the corpora without an associated shared task. Previous version (1.2) was associated with the PARSEME Shared Task on semi-supervised Identification of Verbal MWEs (2020). The data covers 26 languages corresponding to the combination of the corpora for all previous three editions (1.0, 1.1 and 1.2) of the corpora. VMWEs were annotated according to the universal guidelines. The corpora are provided in the cupt format, inspired by the CONLL-U format. Morphological and syntactic information, ­­­­including parts of speech, lemmas, morphological features and/or syntactic dependencies, are also provided. Depending on the language, the information comes from treebanks (e.g., Universal Dependencies) or from automatic parsers trained on treebanks (e.g., UDPipe). All corpora are split into training, development and test data, following the splitting strategy adopted for the PARSEME Shared Task 1.2. The annotation guidelines are available online: https://parsemefr.lis-lab.fr/parseme-st-guidelines/1.3 The .cupt format is detailed here: https://multiword.sourceforge.net/cupt-format