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Gurnards are a valuable by-catch of mixed demersal fisheries and are commercially important in European waters, but they are often discarded, reported under “mixed gurnards” and with incomplete biological information by species. In the present work, a total of 558 piper gurnard specimens of between 10.9 and 44.4 cm (1 to 11 years) and 425 red gurnard specimens of between 10.2 and 42.1 cm (0 to 9 years) from the northeast Atlantic (Portuguese) coast were used to study age and growth. The von Bertalanffy growth parameters for piper gurnard were estimated through the combination of whole-otolith readings and back-calculation (L∞=44.7 cm, k=0.16 yr–1 and t0=–2.781 yr). For red gurnard the same growth parameters were estimated using whole-otolith readings (L∞=40.2 cm, k=0.28 yr–1 and t0=–1.074 yr). The results indicate that the red gurnard reaches a smaller length, although it grows faster than the piper gurnard. Natural, instantaneous and fishing mortalities were estimated as well as the exploitation rate for both species. For the Portuguese coast, the red gurnard showed a higher fishing mortality and exploitation rate than the piper gurnard, raising concerns about its sustainable management., Los rubios son una captura incidental valiosa de las pesquerías demersales mixtas y comercialmente importantes en las aguas europeas, pero a menudo se descartan, se informan como “rubios mixtos” y con información biológica incompleta por especie. En el presente trabajo se han recogido un total de 558 ejemplares de ganeo, de entre 10,9 y 44,4 cm (1 a 11 años), y 425 individuos de arete, de entre 10,2 y 42,1 cm (0 a 9 años) procedentes del Atlántico nororiental (costa portuguesa) se utilizaron para estudiar la edad y el crecimiento. Los parámetros de crecimiento de von Bertalanffy para ganeo se estimaron mediante la combinación de lecturas de otolitos enteros y retrocálculo (L∞=44,7 cm, k=0,16 año–1 y t0=-2,781 años). Para el arete se estimaron los mismos parámetros de crecimiento usando lecturas de otolito entero (L∞=40.2 cm, k=0.28 año–1 y t0=–1.074 año). Los resultados indican que el arete alcanza una talla menor, aunque crece más rápido que el ganeo. Se estimó la mortalidad natural, instantánea y por pesca, así como la tasa de explotación para ambas especies. Para la costa portuguesa, el arete presentó una mortalidad por pesca y una tasa de explotación más altas que el ganeo, lo que generó preocupaciones sobre su gestión sostenible.

Relat?rio Final de Pr?tica de Ensino Supervisionada do Mestrado em Educa??o Pr?-escolar e Ensino do 1.? Ciclo do Ensino B?sico apresentado na Escola Superior de Educa??o do Instituto Polit?cnico de Viana do Castelo O presente relat?rio foi desenvolvido no ?mbito da unidade curricular de Pr?tica de Ensino Supervisionada (PES), inserida no Mestrado em Educa??o Pr?-Escolar e Ensino do 1.? Ciclo do Ensino B?sico, da Escola Superior de Educa??o do Instituto Polit?cnico de Viana do Castelo. Ao longo deste trabalho, encontram-se contextualizados os dois contextos educativos, nos quais foi realizada a PES, bem como os percursos de interven??o feitos em cada um. ? apresentado, tamb?m, o enquadramento da problem?tica em estudo e, por fim, uma reflex?o geral sobre a PES. Cada vez mais a leitura ? reconhecida como fundamental para o desenvolvimento de diversas compet?ncias e, por isso, deve ser um ato regular na vida das crian?as e das suas fam?lias. Apesar de nem todas as crian?as apresentarem os mesmos h?bitos de leitura, cabe ao educador e ? fam?lia incutir nelas esses h?bitos, para que se tornem bons leitores e sintam prazer e interesse pela leitura e pelo contacto com os livros. O estudo realizado foi desenvolvido num grupo de crian?as do pr?-escolar, com idades compreendidas entre tr?s e seis anos, e partiu da quest?o ?De que forma um programa de leitura pode potenciar o gosto pelo livro e pela leitura??. Para dar resposta a esta quest?o, estabeleceram-se quatro objetivos principais: i) respeitar o livro, enquanto perten?a comum; ii) estimular na crian?a o prazer e gosto pela leitura; iii) promover momentos de leitura em fam?lia; iv) conhecer o que as crian?as privilegiam nas hist?rias que ouvem. Optou-se por uma metodologia de car?cter qualitativo, com design de estudo de caso. Os dados foram recolhidos atrav?s de observa??o participante, de question?rio e entrevista semiestruturada, registos realizados pelas crian?as e meios audiovisuais. Os resultados demonstraram que a implementa??o do programa de leitura contribuiu para o desenvolvimento nas crian?as do gosto pela leitura e pelos livros e para o aumento do tempo de leitura em contexto familiar. This report was developed within the scope of the curricular unit of Supervised Teaching Practice (SEP), part of the Master's Degree in Pre-school Education and Teaching in the1st Cycle of Basic Education of the School of Education of the Polytechnic Institute of Viana do Castelo. Throughout this work, the two educational contexts in which the SEP was carried out are contextualized, as well as the intervention paths taken in each one. It also presents the framework of the problem under study and, finally, a general reflection on the SEP. Reading is increasingly recognized as fundamental to the development of various skills and, therefore, should be a regular act in the lives of children and their families. Although not all children have the same reading habits, it is up to the educator and the family to instill these habits in them so that they become good readers and feel pleasure and interest in reading and in contact with books. The study was developed in a group of preschool children, aged between three and six years old, and was based on the question "How can a reading program enhance the taste for books and reading?" To answer this question, four main objectives were established: i) respect the book, as a common belonging; ii) stimulate in the child the pleasure and taste for reading; iii) promote family reading moments; iv) know what children prefer in the stories they hear. We chose a qualitative methodology, with a case study design. Data were collected through participant observation, questionnaire and semi-structured interview, records made by the children and audiovisual media. The results showed that the implementation of the reading program contributed to the development of the children's taste for reading and books and to the increase of reading time in the family context.

ACKNOWLEDGEMENTS : This study was partially supported by the European Maritime and Fisheries Fund MAR2020 project “VALOREJET: Valorização de espécies rejeitadas e de baixo valor commercial,” MAR-01.03.01-FEAMP0003, and by Fundação para a Ciência e Tecnologia through research contracts attributed to Vera Sequeira (CEECIND/02705/2017) and Ana Rita Vieira (CEECIND/01528/2017) and strategic project UID/MAR/04292/2019. The depletion and overexploitation of several fish stock demands for a valorisation of non-target and discarded species. Nonetheless, such species are often poorly studied, and information on their biological parameters must be gathered for effective population management. For 1 year, the reproductive strategy of the piper gurnard Trigla lyra and the red gurnard Chelidonichthys cuculus was studied by monthly samples obtained from commercial boats operating on western Portuguese coast. Both species showed a biased sex ratio towards females, especially for larger length classes. Length at first maturity could be estimated only for red gurnard (22.1 and 19.9 cm for females and males, respectively) because all piper gurnard individuals caught were mature. Piper gurnard showed determinate fecundity and a short spawning season, from November to February with a peak in January, whereas red gurnard showed indeterminate fecundity and a wide spawning season, from late December to May. The relative annual fecundity estimated for red gurnard (1893 ± 728 oocytes x g-1 eviscerated weight [EW]) was higher than the one estimated for piper gurnard (1018 ± 250 oocytes x g-1 EW). Although important information for understanding the species dynamics is presented in this study, additional information on other life-history parameters and of species landings is required. info:eu-repo/semantics/publishedVersion

The complexity and spatio–temporal scale of populations’ dynamics influence how populations respond to large‐scale ecological pressures. Detecting and attributing synchrony (i.e. temporally coincident fluctuations in populations’ parameters) is key as synchronous populations can become more vulnerable to stochastic events that can affect the viability of harvest and have profound consequences to community structure. Here, we aimed to estimate the level of synchrony in fish growth within and among species across 1 million km2 and identify the environmental drivers contributing to synchronous population fluctuations. We developed otolith increment‐based growth chronologies for two deep‐sea scorpaenid fishes (Helicolenus dactylopterus and Pontinus kuhlii) from geographically and bathymetrically disjunct populations in the northeast Atlantic (one species in three locations; two species with different depth preferences). We used hierarchical models to partition variation in growth within and between populations attributing it to intrinsic (age, species, population) and extrinsic (environmental variables) drivers. We assessed synchrony in growth variation within and among species and identified common change points in population specific growth patterns. We documented time‐variant synchrony in growth variation of geographically and bathymetrically segregated deep‐sea fish populations, lasting 25 and 18 years, respectively. The observed synchrony was likely driven by shared environmental forcing (Moran effect) as large‐scale climate indices (East Atlantic pattern and North Atlantic Oscillation) were important environmental drivers of overall growth variation while the onset of synchrony in growth variation was likely related to marine regime shifts occurring in a wide area of the northeast Atlantic that affected the entire ecosystem. However, our capacity to extrapolate growth information across species and locations was dependent on the timing and magnitude of environmental change. Developing a better understanding of the mechanisms driving growth synchrony is key to ensure sustainable management of populations in habitats that are fragile and highly sensible to environmental change, such as the deep‐sea.

ACKNOWLEDGMENTS : Authors are very grateful to FCT (Fundação para a Ciência e a Tecnologia) for the financial support attributed to A.R.V and V.S. through CEECIND/01528/2017 and CEECIND/02705/2017, respectively, and of this work through the project UID/MAR/04292/2020, attributed to MARE – Marine and Environmental Sciences Centre, Polytechnic of Leiria. This work was also partially funded by the Integrated Programme of SR&TD “SmartBioR” (reference Centro-01-0145-FEDER-000018) cofunded by Centro 2020 program, Portugal2020, European Union, through the European Regional Development Fund and by project VALOREJET (16–01-03-FMP-0003), Operational Program Mar 2020, Portugal, through the European Maritime and Fisheries Fund. Target species diversification is essential for fisheries sustainability and fish market revitalization. Fish discards are a widely recognized problem resulting from fisheries worldwide, and are of major concern for all sector players, from administrations, to fishermen, and scientists. However, non-target species are seldom studied, and information on nutritional profiles and seasonal changes in nutritional properties is generally lacking. This study assessed the seasonal nutritional composition of two unexploited (Serranus cabrilla, Capros aper) and three low commercial value fish species (Trachurus picturatus, Spondyliosoma cantharus, and Trigla lyra), captured on the Portuguese coast over 1 year. Significant seasonal variations were observed in the nutritional composition of all the species studied. Moisture and ash contents varied from 70% to 81% and from 5% to 13%, respectively. The maximum fat contents were 5% for C. aper and 4% for T. picturatus, allowing to classify all studied fishes as lean. The highest protein contents were recorded for C. aper (25%) and S. cantharus (20%). The unexploited and low commercial value fish species studied were shown to be good fat and protein sources, comparable to commonly consumed species, such as cod and salmon, having a great potential to become commonly consumed fish in Portugal. info:eu-repo/semantics/publishedVersion

AIM: Habitat diversity has been linked to the diversity and structure of island communities, however, little is known about patterns and processes within habitats. Here we aim to determine the contributions of habitat type and inferred dispersal frequency to the differences in taxonomic structure between assemblages in the same island habitat. LOCATION: The Macaronesian archipelagos (Azores, Madeira, the Canary Islands and Cabo Verde). TAXON: Spiders (Araneae). METHODS: We established forest and dry habitat sites (each with five plots) on two islands per archipelago. We collected spiders using standardised sampling protocols. We tested the differences in beta diversity separately for each habitat and for each inferred category of ballooning (an aerial dispersal strategy) frequency across geographic scales through nested non-parametric permutational multivariate analyses of variance. We then tested whether ballooning and habitat influenced heterogeneity in species composition (dispersion in beta diversity) in the two habitat types. We analysed the effects of habitat and ballooning on species abundance distribution (SAD) and rarity by fitting Gambin models and evaluating the contribution of ballooning categories to SAD. RESULTS: Communities of the same archipelago and habitat were taxonomically more similar, and beta diversity increased with geographic scale, being greater in dry habitats. There was greater species replacement among assemblages in dry habitats than in forests, with greater differences for rare ballooners. There were no differences in SAD between habitats although dry habitat sites seemed to harbour more species with low abundances (rare species) than forests. MAIN CONCLUSIONS: Habitat type does not only condition the differences between spider assemblages of the same habitat but also the scale at which they occur. These differences may be determined by the heterogeneity in the physical structure of each habitat as well as how much this structure facilitates aerial dispersal (ballooning), and should be considered in theories/hypotheses on island community assembly as well as in conservation strategies. The Government of the Canary Islands, Grant/Award Number: SE-12/02, SE-12/03 and SE-12/04; Fundação para a Ciência e a Tecnologia, Grant/Award Number: FCT-PTDC/BIABIC/0054/2014, DL57/2016/CP1375/CT0003 and UIDB/00329/2020-2024; FEDER, Grant/Award Number: 0003/2011 info:eu-repo/semantics/publishedVersion

Climate change and fishing are drastically impacting marine ecosystems. Comprehending the biological consequences of these effects on commercially exploited fish is especially challenging. Here, we developed a 43-year otolith increment width-based growth chronology for one of the most important commercially exploited fish species in the Northeast Atlantic (European hake, Merluccius merluccius). Increasingly complex linear mixed-effects models were used to partition growth variation into intrinsic (age, sex, and age-at-capture) and extrinsic (environmental and biotic variables) factors, allowing age interaction with extrinsic variables to assess age-dependent responses in growth. Our results provided strong evidence that European hake growth is impacted by ocean temperature, namely sea surface temperature and temperature at depth, and species abundance (recruitment), with different responses depending on fish age. We found evidence that increasing ocean temperature could be highly detrimental for species growth especially during the first years of life. We provided insights into the effects of environmental and biotic factors on species growth variation. Such information is key to recognize the sensitivity of European hake growth to climate change, which may contribute to sustainable management policies for this valuable resource.

Knowledge on population units is critical for understanding population dynamics and providing an adequate fisheries management. Despite its vast distribution and commercial importance, there is no information on black seabream population structure. Different approaches to otolith analysis were used to elucidate on the stock structure of this species. Otoliths from seven areas along the eastern Atlantic: English Channel, Bay of Biscay, Galicia (Spain), Peniche (west coast of Portugal), Algarve (south coast of Portugal), the Canary Islands and Angola were compared through elliptical Fourier analysis and oxygen and carbon stable isotopes ratio. Otolith shape analysis data achieved 80% of correct assigned specimens in discriminant analysis while poor correct assignment levels were achieved with the stable isotopes ratio. However, the PERMANOVA conducted on δ13C and δ18O values revealed significant differences between all areas, with exception of the two Portuguese areas. The results of this study indicate that black seabream spends most of its life in the same area and that the studied populations should probably be considered as different stock units. However, some mixture was detected in the European region pointing for the usefulness of life history parameters and genetic studies to enlighten the stock structure of the species.

The boarfish Capros aper is one of the most commonly discarded non-commercial species in the International Council for the Exploration of the Sea (ICES) Subdivision VIII in the Atlantic. An increasing interest in this fishery and an incomplete knowledge on the status of the stock justified the present investigation focused on the determination of fecundity type and its estimation, supported by sex steroid profiles for 17 beta-oestradiol (E2), 11-ketotestosterone and 17,20 beta-dihydroxypregn-4-en-3-one (17,20 beta-P). C. aper was found to have indeterminate fecundity with a mean relative batch fecundity during the spawning peak of 50 oocytes g(-1) eviscerated weight (W-E) and a mean relative annual fecundity of 4020 oocytes g(-1) W-E. E2 variations throughout the year indicated the existence of at least two important spawning events, one in winter (January-February) and the other in summer (June-August), with concentrations in females increasing from those with growing oocytes in the developing phase to those in the spawning capable phase. Higher E2 concentrations were also found from 2000 to 2400 hours and from 0800 to 1200 hours suggesting more intense vitellogenesis activity during the night and in the morning, in contrast to 17,20 beta-P concentrations, which were higher between 1200 and 2000 hours, suggesting a more intense spawning activity during this period. UID/MAR/04292/2019, UID/Multi/04326/2019, CEECIND/02705/2017, CEECIND/01528/2017, SFRH/BPD/108917/2015 info:eu-repo/semantics/publishedVersion

Fatigue is highly prevalent in COPD and may be associated with reduced physical activity (PA) and poor outcomes. This study explored the relationship between fatigue, objectively measured PA and health-related factors in people with COPD. Fatigue was assessed with the Checklist of Individual Strength (CIS20) and CIS20-Subjective Fatigue (CIS20-SF) and PA with Actigraph GT3X monitors (moderate-to-vigorous PA, MVPA; total PA; steps/day). Dyspnoea (modified Medical Research Council, mMRC), exercise tolerance (6-min walk distance, 6MWD), lung function (spirometry) and GOLD AD were collected. Spearman (ρ) and Pearson (r) correlations and multiple regressions were performed. Variables entered the model if correlation≥0.2. 54 patients participated (68±7 years; 82% men) and 69% reported fatigue (CIS20-SF≥27). Fatigue was significantly correlated with MVPA, steps/day, mMRC, 6MWD, GOLD AD and FEV pp (Table 1). In regression models for CIS20 (p=.001; r =.61) and CIS20-SF (p=.003; r =.56), dyspnoea was the only significant variable. Table 1. Descriptives and correlations between fatigue, PA and health-related factors. Descriptives CIS20 CIS20-SF 1 2 2 d THANK YOU FOR ACCEPTING COOKIES You can now hide this message or find out more about cookies. Hide More info

Objective: To characterize the adherence to the Mediterranean diet (MD) in students from elementary schools in Porto and Maia and analyze its association with sleep hygiene, physical activity, cardiometabolic risk, and school performance. Methods: This is a cross-sectional study with 891 Portuguese students: 455 boys (51%) and 436 girls (49%), aged between 9 and 11 years old (mean [M]=9.2, standard deviation [SD]=0.4), with an average weight of 35.9 kg (SD=8.1), average height of 1.4 m (SD=0.1), average body mass index (standardized BMI Z score for the pediatric age group) of 0.76 (SD=1.21); 59.5% of them had normal weight and 15.9% were obese. The students filled a questionnaire on the adherence to the Mediterranean Diet (Mediterranean Diet Quality Index in Children and Adolescents [KIDMED]), participated in a socio-demographic interview, and had their anthropometric data collected after their parents signed the informed consent form. Results: The results suggest high levels of adherence to the MD (77.6%) both in males and females. Using Pearson’s correlation coefficient, we found that the Z score was positively associated to cardiometabolic risk and the starting age of an extracurricular physical activity, and negatively associated to the average hours of sleep on a typical day both in males and females. We also identified a negative relation between KIDMED and the starting age of physical activity. Conclusions: This study has contributed to the knowledge of adherence to the MD among Portuguese elementary students and correlations with variables associated to a healthier lifestyle (MD, hours of sleep, and physical activity). Future studies should focus their attention on other countries and more heterogeneous samples. RESUMO Objetivo: Caracterizar a adesão à dieta mediterrânica de alunos de escolas primárias do Porto e Maia e analisar a sua associação com a higiene do sono, a atividade física, o risco cardiometabólico e o desempenho escolar. Métodos: Estudo transversal com 891 alunos portugueses: 455 meninos (51%) e 436 meninas (49%), entre 9 e 11 anos (média [M]= 9,2; desvio padrão [DP]= 0,4), peso médio 35,9 kg (DP= 8,1), estatura média 1,4 cm (DP= 0,1), índice de massa corporal médio (IMC padronizado por escore Z para a faixa etária pediátrica) 0,76 (DP= 1,2), 59,5% de pessoas com peso adequado e 15,9% de obesos. Os alunos completaram o Índice de Qualidade de Adesão à Dieta Mediterrânica em Crianças e Adolescentes (Mediterranean Diet Quality Index in Children and Adolescents [KIDMED]) e uma entrevista sociodemográfica e dados antropométricos, após obtenção do consentimento informado dos pais. Resultados: Os resultados sugerem altos níveis de adesão ao padrão alimentar mediterrânico (77,6%), tanto nos meninos como nas meninas. Recorrendo ao coeficiente de correlação de Pearson, encontramos associação positiva entre o escore Z e o risco cardiometabólico, associação negativa entre o escore Z e a média de horas de sono em um dia típico nos meninos e nas meninas, associação positiva entre o escore Z e a idade de início de uma atividade física extracurricular e associação negativa entre o KIDMED e a idade de início da atividade física. Conclusões: Este estudo contribuiu para o conhecimento da adesão ao padrão alimentar mediterrânico de alunos do 1º ciclo de escolaridade do Porto e da Maia e correlações com variáveis associadas a um estilo de vida mais saudável (adesão à dieta mediterrânica, horas de sono e atividade física). Estudos futuros deverão focar a sua atenção em outros países e com amostras mais heterogêneas.

We live in a world of limited biological resources and ecosystems, which are essential to feed people. Consequently, diversifying target species and considering full exploitation are essential for fishery sustainability. The present study focuses on the valorization of three low commercial value fish species (blue jack mackerel, Trachurus picturatus, black seabream, Spondyliosoma cantharus, and piper gurnard, Trigla lyra) and of two unexploited species (comber, Serranus cabrilla and boarfish, Capros aper) through the development of marine-based food products with added value. A preliminary inquiry with 155 consumers from Regi&atilde, o de Lisboa e Vale do Tejo (Center of Portugal) was conducted to assess fish consumption, the applicability of fish product innovation, and the importance of valorizing discarded fish. Five products (black seabream ceviche, smoked blue jack mackerel p&acirc, t&eacute, dehydrated piper gurnard, fried boarfish, and comber pastries) were developed and investigated for their sensory characteristics and consumer liking by hedonic tests to 90 consumers. The most important descriptors were identified for each product (texture, flavor, color, and appearance). Comber pastries had the highest purchase intention (88%), followed by black seabream ceviche (85%) and blue jack mackerel p&acirc, (76%). Sensory evaluations showed a clear tendency of consumers to accept reformulated products, with the introduction of the low-value and unexploited species under study.

Overfishing is increasing over time, and according to FAO (Food and Agriculture Organization), about one third of the world&rsquo, s fish stocks are now overfished. Thus, diversifying the target species is essential for fisheries sustainability contributing to improve resource-efficient processes. Non-target species can be valuable resources for the development of new food products. However, those species are scarcely studied, and it is of high importance to trace their seasonal sensory profile as a first step towards their valorisation. Therefore, in this study, seasonal influence on sensory properties of five low commercial value or unexploited fish species, namely Trachurus picturatus (blue jack mackerel), Spondyliosoma cantharus (black seabream), Trigla lyra (piper gurnard), Serranus cabrilla (comber) and Capros aper (boarfish), was assessed in order to identify the most favourable season for catching each species. Fish samples were assessed by a panel of 16 semi-trained assessors for sensory attributes previously identified. The evaluation takes place every 2 months. Statistical differences were reported between attributes and seasons for all species, except for T. lyra, which did not present any difference in its sensory attributes throughout the year.

During the COVID-19 pandemic, the need to provide high-level care for a large number of patients with COVID-19 has affected resourcing for, and limited the routine care of, all other conditions. The impact of this health emergency is particularly relevant in the rare connective tissue diseases (rCTDs) communities, as discussed in this Perspective article by the multi-stakeholder European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases (ERN ReCONNET). The clinical, organizational and health economic challenges faced by health-care providers, institutions, patients and their families during the SARS-CoV-2 outbreak have demonstrated the importance of ensuring continuity of care in the management of rCTDs, including adequate diagnostics and monitoring protocols, and highlighted the need for a structured emergency strategy. The vulnerability of patients with rCTDs needs to be taken into account when planning future health policies, in preparation for not only the post-COVID era, but also any possible new health emergencies., In this Perspective article, members of the European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases discuss clinical and organizational challenges in this community caused by the COVID-19 pandemic and what lessons might be learned for the future.

Objective The European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases involves health care providers (HCPs) from 8 European countries and 7 patients’ representatives of European Patient Advocacy Groups. The objective was to evaluate current practice and unmet needs for patient education (PE) in Europe. Methods A questionnaire was sent to HCP members asking about the PE practices and another, to enquire about their needs, was sent to patients’ associations in the different countries. Results The questionnaire was completed by 33 HCPs. Half had no specific staff members dedicated to PE. For HCPs with dedicated staff, 83.3% (n = 11) considered that care providers were insufficient to meet patients’ needs. Most of HCPs would like to see the practice of PE standardized. Sixty eight percent (n = 1093) of patients suffering from connective tissue diseases completed the questionnaire had never heard about PE. Most of them were interested in taking part in a PE program. Discussion Our survey revealed a strong interest in PE among patients and HCP and heterogeneity of practice. PE appeared important for both HCPs and patients. An online course for medical students in Europe will be developed in partnership with EULAR to respond to these unmet needs.

Community detection techniques use only the information about the network topology to find communities in networks. Similarly, classic clustering techniques for vector data consider only the information about the values of the attributes describing the objects to find clusters. In real-world networks, however, in addition to the information about the network topology, usually there is information about the attributes describing the vertices that can also be used to find communities. Using both the information about the network topology and about the attributes describing the vertices can improve the algorithms’ results. Therefore, authors started investigating methods for community detection in attributed networks. In the past years, several methods were proposed to uncover this task, partitioning a graph into sub-graphs of vertices that are densely connected and similar in terms of their descriptions. This article focuses on the analysis and comparison of some of the proposed methods for community detection in attributed networks. For that purpose, several applications to both synthetic and real networks are conducted. Experiments are performed on both weighted and unweighted graphs. The objective is to establish which methods perform generally better according to the validation measures and to investigate their sensitivity to changes in the networks’ structure and homogeneity.

© 2020 by the authors., Phylogenetic relatedness is a key diversity measure for the analysis and understanding of how species and communities evolve across time and space. Understanding the nonrandom loss of species with respect to phylogeny is also essential for better-informed conservation decisions. However, several factors are known to influence phylogenetic reconstruction and, ultimately, phylogenetic diversity metrics. In this study, we empirically tested how some of these factors (topological constraint, taxon sampling, genetic markers and calibration) affect phylogenetic resolution and uncertainty. We built a densely sampled, species-level phylogenetic tree for spiders, combining Sanger sequencing of species from local communities of two biogeographical regions (Iberian Peninsula and Macaronesia) with a taxon-rich backbone matrix of Genbank sequences and a topological constraint derived from recent phylogenomic studies. The resulting tree constitutes the most complete spider phylogeny to date, both in terms of terminals and background information, and may serve as a standard reference for the analysis of phylogenetic diversity patterns at the community level. We then used this tree to investigate how partial data affect phylogenetic reconstruction, phylogenetic diversity estimates and their rankings, and, ultimately, the ecological processes inferred for each community. We found that the incorporation of a single slowly evolving marker (28S) to the DNA barcode sequences from local communities, had the highest impact on tree topology, closely followed by the use of a backbone matrix. The increase in missing data resulting from combining partial sequences from local communities only had a moderate impact on the resulting trees, similar to the difference observed when using topological constraints. Our study further revealed substantial differences in both the phylogenetic structure and diversity rankings of the analyzed communities estimated from the different phylogenetic treatments, especially when using non-ultrametric trees (phylograms) instead of time-stamped trees (chronograms). Finally, we provide some recommendations on reconstructing phylogenetic trees to infer phylogenetic diversity within ecological studies., This study was supported by the project BIODIV ISLAND-CONT (Biodiversity drivers on islands and continents–706482) funded by Marie Sklodowska-Curie Individual Fellowships (H2020-MSCA-IF-2015) to the first author N.M.-H. The research was additionally funded by four other projects that provided the material collected: 1. ERA-Net Net-Biome research framework, financed through Portuguese FCT-NETBIOME grant 0003/2011 (P.A.V.B.). 2. ERA-Net Net-Biome financed through Canary Islands Government ACIISI grants SE-12/02, SE-12/03, SE-12/04 (B.C.E.), co-financed by FEDER. 3. FCT MACDIV–FCT-PTDC/BIABIC/0054/2014 (P.A.V.B.,B.C.E., P.C., I.R.A., F.R., O.S.P., A.V.). 4. Organismo Autónomo de Parques Nacionales Spain (OAPN #485/2012) (M.A.A.). Additional support was provided by grant 2017SGR83 from the Catalan Government to M.A.A. M.D. was supported by an APIF PhD fellowship from the University of Barcelona. J.L.-F. was supported by a Juan de la Cierva Fellowship (FJCI-2015-23723). I.R.A. was funded by Portuguese funds through FCT–Fundação para a Ciência e a Tecnologia, I.P., under the Norma Transitória–DL57/2016/CP1375/CT0003. Open access funding provided by University of Helsinki.

DOI: http://dx.doi.org/10.12957/rdc.2012.9721 Trabalho recebido e avaliado pelos Conselhos Editorial e Executivo da Revista de Direito da Cidade Resumo: O trabalho apresenta uma analise do instituto juridico da posse , fazendo observacoes desde a idade media ate a contemporaneidade realcando as diversas vertentes de atuacao de sua funcao social, demonstrando um conteudo mais amplo, inclusive, o de representar a garantia de exploracao sustentavel do meio ambiente, de acordo com uma gestao participativa de toda a sociedade nos termos do art. 225 da CF. Tambem, e analisado como importante instrumento para a construcao de uma identidade multicultural, principalmente no que se refere ao desenvolvimento e preservacao dos conhecimentos, inovacoes e praticas das populacoes tradicionais, dos indios e quilombolas, associados a biodiversidade. Palavras-chave: posse- sociedade- multiculturalismo- inovacoes praticas Abstract: The paper presents an analysis of the legal institution of possession, making observations from the Middle Ages to the contemporary emphasizing the various aspects of performance of its social function, demonstrating a broader content, including, to represent the guarantee of sustainable exploitation of environment, according to a participatory management of the entire society under Art. 225 of the Constitution. Is also considered as an important instrument for building a multicultural identity, especially with regard to the development and protection of knowledge, innovations and practices of traditional peoples, the Indians and Maroons, associated with biodiversity. Keywords: possession -society-multiculturalism-innovations

Resolution of population structure represents an effective way to define biological stocks and inform efficient fisheries management. In the present study, the phylogeography of the protogynous sparid Spondyliosoma cantharus, in the East Atlantic and Mediterranean Sea, was investigated with nuclear (S7) and mitochondrial (cytochrome b) DNA markers. Significant divergence of four regional genetic groups was observed: North Eastern Atlantic, Mediterranean Sea, Western African Transition (Cape Verde) and Gulf of Guinea (Angola). The two southern populations (Cape Verde and Angola) each comprised reciprocally monophyletic mtDNA lineages, revealed low levels of diversity in Cape Verde and high diversity for Angola despite being represented by only 14 individuals. A complete divergence between North Atlantic and Mediterranean populations was depicted by the mitochondrial marker, but a highly shared nuclear haplotype revealed an incomplete lineage sorting between these regions. Bayesian skyline plots and associated statistics revealed different dynamics among the four regions. Cape Verde showed no expansion and the expansion time estimated for Angola was much older than for the other regions. Mediterranean region seems to have experienced an early population growth but has remained with a stable population size for the last 30000 years while the North Atlantic population has been steadily growing. The lack of genetic structuring within these regions should not be taken as evidence of demographic panmixia in light of potential resolution thresholds and previous evidence of intra-regional phenotypic heterogeneity.

The capacity of bacterial pathogens to infect their hosts depends on the tight spatiotemporal regulation of virulence genes. The Listeria monocytogenes (Lm) metal efflux pump repressor CadC is highly expressed during late infection stages, modulating lipoprotein processing and host immune response. Here we investigate the potential of CadC as broad repressor of virulence genes. We show that CadC represses the expression of the bile salt hydrolase impairing Lm resistance to bile. During late infection, in absence of CadC-dependent repression, the constitutive bile salt hydrolase expression induces the overexpression of the cholic acid efflux pump MdrT that is unfavorable to Lm virulence. We establish the CadC regulon and show that CadC represses additional virulence factors activated by sB during colonization of the intestinal lumen. CadC is thus a general repressor that promotes Lm virulence by down-regulating, at late infection stages, genes required for survival in the gastrointestinal tract. This demonstrates for the first time how bacterial pathogens can repurpose regulators to spatiotemporally repress virulence genes and optimize their infectious capacity. This work was supported by grants to DC (FEDER - Fundo Europeu de Desenvolvimento Regional funds through the NORTE 2020 - Norte Portugal Regional Operational Programme, Portugal 2020, and by Portuguese funds through FCT - Fundação para a Ciência e a Tecnologia/Ministério da Ciência, Tecnologia e Ensino Superior in the framework of the project NORTE-01-0145-FEDER-030020 PTDC/SAU-INF/30020/2017); to PC (European Research Council - ERC - Advanced Grant BacCellEpi 670823). R.P. and A.C. received an FCT Doctoral Fellowship (SFRH/BD/89542/2012, SFRH/BD/29314/2006) through FCT/MEC co-funded by QREN and POPH (Programa Operacional Potencial Humano). SS was supported by FCT Investigator program (COMPETE, POPH and FCT).

Background Here we present the data obtained from the samples collected as part of a large research project (MACDIV) which aims at understanding the drivers of spider (Araneae) community assembly in Macaronesian islands. To obtain the data, we applied the sampling protocol COBRA (Conservation Oriented Biodiversity Rapid Assessment), in twelve 50 m x 50 m native forest plots and five dry habitat plots on the island of Madeiraand in 5 dry habitat plots on the island of Porto Santo. Through this publication, we contribute to the knowledge of the arachnofauna of the Madeiran archipelago. New information From the samples that we collected, we obtained a total of 14,902 specimens, of which 49% were adults (7,263). We identified these specimens to 87 species and 18 morphospecies (undescribed), belonging to 26 families. Species of the family Linyphiidae dominated the samples, with 24 (morpho)species. Out of the 105 recorded (morpho)species, 34 were endemic, 26 native non-endemic, 22 introduced and 23 species of unknown origin. We report seven new records of possibly recently introduced species in the Madeiran archipelago. We also present 21 new records for Madeira island and 32 for Porto Santo (33 for the whole archipelago)., This research was supported by the project FCT MACDIV financed by Fundação para a Ciência e a Tecnologia – ref. FCT-PTDC/BIABIC/0054/2014, that also supported the Open Access of the manuscript. We are grateful to the Madeira Natural Park for the logistic support as well as permission for the collection of specimens.

IntroductionThe European Reference Network (ERN) ReCONNET is the ERN aimed at improving the management of rare and complex connective tissue and musculoskeletal diseases (rCTDs) across the European Union (EU). In the mission of ERN ReCONNET, clinical practice guidelines (CPGs) play a crucial role, representing a valid tool towards the harmonisation of the management of rCTDs while improving effectiveness and quality of care delivered to patients.MethodsERN ReCONNET developed two surveys to map the adherence to rCTDs CPGs among healthcare providers and to assess the knowledge and awareness of CPGs for their diseases among patients, family members and caregivers.ResultsThe results of the surveys highlighted that healthcare professionals find it useful to apply CPGs in clinical practice (93%), while 62% of them experience difficulties and barriers in the application in their centres. Healthcare professionals also highlighted the need to develop CPGs for all rCTDs and to implement the use of the existing CPGs in clinical practice. On the other hand, patients, families and caregivers are relatively aware of the purpose of CPGs (51%) and 62% of them were aware of the existence of CPGs for their disease. Patient-friendly versions of CPGs and patients’ lifestyle guidelines should be systematically developed contributing to the empowerment of patients in the disease management.ConclusionERN ReCONNET is addressing the main issues identified in the results of the survey, promoting practical actions for the local adaptation of CPGs across Europe, improving their routine clinical use and increasing the awareness on CPGs among rCTDs patients, family members and caregivers.

This study was partially supported by the European Maritime and Fisheries Fund MAR2020 project ‘VALOREJET: Valorização de espécies rejeitadas e de baixo valor comercial’, MAR-01.03.01-FEAMP-0003 and by Fundação para a Ciência e Tecnologia through research contracts attributed to V.S. (CEECIND/02705/2017) and A.R.V. (CEECIND/01528/2017), and strategic project UID/MAR/ 04292/2019. Reproduction of Trachurus picturatus off the western Portuguese coast was studied over 1 yr. During histological analyses, the presence of Kudoa sp. was detected in advanced vitellogenic oocytes. Kudoa infections are known to cause economic loss through the induction of postmortem liquefaction of fish muscles, but ovarian infection as reported in this study will seriously affect the reproductive potential of the species and thus impact fisheries productivity. Only females showed gonad infection which led to total degradation of advanced vitellogenic oocytes. No macroscopic, somatic or condition indices revealed differences between infected and uninfected females, rendering this infection event a concealed suppression of reproduction. info:eu-repo/semantics/publishedVersion

O câncer de mama é um grave problema de saúde pública, o segundo tipo mais prevalente entre as mulheres e responde por 28,1% das neoplasias. A busca pelas Práticas Integrativas e Complementares tem aumentado em diversas regiões, e a acupuntura é uma das práticas mais utilizadas da MTC, inclusive na oncologia, com vistas a tratar sintomas do câncer ou dos efeitos adversos do tratamento oncológico. Entre as queixas, encontram-se a ansiedade e o estresse, que causam grandes transtornos. Esta revisão integrativa buscou conhecer, na literatura, informações sobre a aplicação da acupuntura na ansiedade e no estresse de mulheres com câncer de mama. Realizou-se a busca entre julho e novembro de 2015 nas bases de dados da LILACS, MEDLINE, PsycINFO e banco de teses da CAPES, utilizando descritores apropriados. Foram identificados 6 estudos; sendo 3 transversais, 1 descritivo, 1 de coorte transversal e 1 caso controle de base populacional. Os artigos demonstraram a efetividade da acupuntura no tratamento do estresse e da ansiedade no câncer de mama no período per-operatório e durante a quimioterapia. A prevalência do uso da MTC concomitante ao tratamento ocidental é alta, embora a acupuntura seja pouco usada. A desinformação entre os profissionais de saúde ainda perdura e precisa ser mais bem compreendida. Estudar a efetividade em todas as etapas do tratamento oncológico e que avaliem as taxas de recidiva e sobrevida de usuários da acupuntura associada ao tratamento oncológico é indicada.

Two hundred and seven individuals (103 females and 104 males) of bluemouth Helicolenus dactylopterus (Scorpaeniformes, Sebastidae), a commercially important deep-water species with an unusual reproductive strategy, from the eastern Atlantic Ocean ranging from 13·9 to 37·5 cm total length (LT ) were analysed from September 2011 to October 2012. The analysis included gonad maturity phases and blood-plasma levels of oestradiol-17β (E2 ), 11-ketotestosterone (11-KT) and 17,20β-dihydroxypregn-4-en-3-one (17,20β-P). Results confirmed the existence of an annual reproductive cycle with asynchrony between females and males and a spawning season from January to May. A pronounced peak in 17,20β-P in October for both sexes was associated with possible mating behaviour and recent copula. Levels of E2 increased preceding the elevation of the gonado-somatic index during ovarian growth and were lower during regression and regeneration. The frequency distribution of oocyte-embryonic stages and variation of hormone levels suggest the existence of daily rhythms. Fertilization was detected between 2000-0000 and 0800-1200 h and spawning took place throughout the day peaking between 2000 and 0000 h. The cyclic pattern of sex steroids and ovarian recruitment provides a new insight into the reproductive strategy of this species.

Actions to prevent and maintain the health of the elderly, in their community and at home, should be the result of an effort of public and / or private partnerships, academia and service. The VintANGEING+Happy Program aims to carry out a multidisciplinary work of community intervention, providing scientific knowledge and contributing to the compliance with the guidelines and policies of public attention to the health of the elderly in the direction of active and healthy aging. RESUMEN: Las acciones de prevención y mantenimiento de la salud de los ancianos, en su comunidad y en el hogar, deben ser el resultado de un esfuerzo de asociaciones públicas y / o privadas, gimnasio y servicio. El programa VintANGEING+Felizes tiene como objetivo llevar a cabo un trabajo multidisciplinario de intervención comunitaria, proporcionando conocimiento científico y contribuyendo al cumplimiento de las directrices y políticas de atención de salud pública para personas mayores, en la dirección del envejecimiento activo y saludable. Ações de prevenção e de manutenção da saúde do idoso, na sua comunidade e no seu domicílio, devem ser resultado de um esforço de parcerias públicas e/ou privadas, academia e serviço. O programa intitulado, VintANGEING+Felizes, tem como finalidade realizar um trabalho multidisciplinar de intervenção comunitária, disponibilizando o conhecimento científico e contribuindo para o cumprimento das diretrizes e das políticas de atenção pública à saúde do idoso, na direção do envelhecimento ativo e saudável.

Background The European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases (ERN ReCONNET) is a virtual Network that aims to improve and standardize the quality of care offered to rCTDs patients in Europe, empower patients, share knowledge and expertise, enhance research, support efficient use of resources. ERN ReCONNET covers 10 rCTDs: APS, UCTD, Idiopathic Inflammatory myopathies, IgG4, MCTD, Systemic sclerosis, Relapsing Polychondritis, SLE, Sjogren and EDS. Objectives Identification of unmet needs in diagnosis, monitoring and management of rCTDs after literature review of existing clinical practice guidelines (CPGs). Methods After the review of existing CPGs, the most relevant unmet needs, both for clinicians and patients, were identified by discussion among the members of the network. Results A considerable number of unmet needs were identified. In particular, the lack of shared classification criteria, of evidence-based CPGs, validated tools for the assessment of treatment response and disease activity/damage are the major unmet needs especially for the rarest rCTDs. Transversal topics for all rCTDs that need to be addressed are the scarcity of EU/international randomised controlled trials, the identification of patient-reported outcomes and non-adherence to treatment, quality of life indicators, the need to develop composite disease activity scores for all rCTDs and specific (inter)national web-based registries. Patients highlighted the need of a more holistic approach to rCTDs, demanding more attention to pain, fatigue and psychological aspects related to the diseases and the promotion of an early diagnosis. Conclusion The identification of rCTDs unmet needs provided a very useful picture on future actions to be undertaken in order to provide a better care to patients. Many activities are ongoing towards these goals in ERN ReCONNET. These will be possible as a result of a EU collaboration among rCTDs stakeholders, the main added value of ERN ReCONNET. Acknowledgement Thanks to all ERN ReCONNET Steering Committe, Healthcare Providers, ePAGs and Team for huge support. Disclosure of Interests Diana Marinello: None declared, Simone Ticciati: None declared, Rosaria Talarico: None declared, Tobias Alexander: None declared, Laurent Arnaud Consultant for: Alexion, Amgen, AstraZeneca, GSK, Janssen-Cilag, LFB, Lilly, Menarini France, Novartis, Pfizer, Roche-Chugai, and UCB., Paid instructor for: Alexion, Amgen, AstraZeneca, GSK, Janssen-Cilag, LFB, Lilly, Menarini France, Novartis, Pfizer, Roche-Chugai, and UCB., Speakers bureau: Alexion, Amgen, AstraZeneca, GSK, Janssen-Cilag, LFB, Lilly, Menarini France, Novartis, Pfizer, Roche-Chugai, and UCB., Lorenzo Cavagna: None declared, Lorenzo Beretta: None declared, Benjamin Chaigne: None declared, Alain Cornet Grant/research support from: No direct financial grants from Pharmaceutical companies, but some grants accrued LUPUS EUROPE does, in the form of Grants or payment for attending advisory boards or providing patient views, Speakers bureau: I have been involved in GSK panels to provide patient perspective. However, the minor service fee obtained accrued to LUPUS EUROPE ratyher than the company, Nathalie Costedoat-Chalumeau: None declared, Rebecca Fischer-Betz Grant/research support from: GlaxoSmithKline and UCB Pharma for performing the LuLa-study., Charissa Hermine Frank: None declared, Ilaria Galetti: None declared, Jurgen Grunert: None declared, vera guimaraes: None declared, Luca Iaccarino: None declared, Maarten Limper Consultant for: GSK, Roche and Thermofisher, Speakers bureau: GSK and Roche, Fransiska Malfait: None declared, Xavier Mariette Grant/research support from: Servier, Consultant for: AstraZeneca, Bristol-Myers Squibb, GlaxoSmithKline, Janssen, Pfizer, UCB Pharma, lisa matthews: None declared, Marco Matucci-Cerinic Grant/research support from: Actelion, MSD, Pfizer, BMS, Chemomab, Sanipedia, Speakers bureau: Actelion, BMS; MSD, Janssen, alain meyer: None declared, Simona Rednic: None declared, Vasco Romao: None declared, Carlo Alberto Scire: None declared, Vanessa Smith: None declared, Alberto Sulli: None declared, Farah Tamirou: None declared, Anna Viola Taulaigo: None declared, Angela Tincani Consultant for: UCB, Pfizer, Abbvie, BMS, Sanofi, Roche, GSK, AlphaSigma, Lillly, Jannsen, Cellgene, Novartis, Ana Vieira: None declared, Maurizio Cutolo: None declared, Marta Mosca Paid instructor for: GlaxoSmithKline, Lilly, UCB

Background Despite its considerable prevalence among CTDs, SS has been devoted less research, interest, time and effort compared with other close conditions. Active and synergistic involvement of patients, clinicians and scientists in the definition of unmet needs and areas of future research is crucial. Objectives To set up a perennial European Federation of SS patient associations to address the lack of visibility and the unmet needs, foster patient training and involvement in research and articulate patient voices throughout Europe. Methods Sjogren Europe was conceived during the 2018 ISSS and the decision to materialize the Federation was launched during the EULAR 2018 congress, where several meetings with key entities representatives were organized to get advice on various aspects. A medical advisory board was also set up. By-laws, a logo and a website were created. The task force is composed of patients already involved in patient advocacy at a national and international level. The first step was to set a mindset and to communicate on a regular basis to ensure a common spirit. We set priorities and down-to-earth objectives and focus on them. Although there is a leader for supervision and to take final decisions, the governance is mainly based on shared leadership sustained by trusted connections. Personal initiatives are encouraged, and failure is considered as a learning experience. We build a culture of compromise. As members experience debilitating fatigue, they achieve the tasks they can, whenever they have time and energy, and report them to the others: Sjogren Europe adapts to its members. We also welcome anyone sharing our mission principles and wanting to be involved in the project. Results On the 23rd of February 2019, Sjogren Europe was officially set up with more than 8 countries as founders. Being flexible not only allows patients with debilitating fatigue to work for the federation but also leads to lean and efficient procedures and tasks. An enthusiastic and supportive environment makes the commitment sustainable and meaningful. Face to face meetings, a good network and collaboration are imperative. The way we respond to mistakes is also crucial for motivation. Conclusion This project empowers the SS patient community, brings hope, injects a new energy in patient advocacy and breathes motivation for collaboration to researchers, scientists and clinicians. This presentation aims to share our story and the key learning points about the way we work and to spread the positive atmosphere. Reference [1] Romao V. C., Talarico R., Scire C. A., et al. Sjogren’s syndrome: state of the art on clinical practice guidelines RMD Open 2018; 4:e000789. doi: 10.1136/rmdopen-2018-000789 Acknowledgement EURORDIS Council of Federations & toolkit, HarmonicSS project, ERN ReCONNET, ISN (International Sjogren’s Network), Lupus Europe, SSF (Sjogren’s Syndrome Foundation) Disclosure of Interests None declared

Background: European Reference Networks (ERNs) are virtual networks involving centres of expertise across EU Member States with the aim of tackling rare and complex diseases. The ERN ReCONNET involves currently 26 healthcare professionals (HCPs) from 8 countries and cover rare and complex connective tissue and musculoskeletal diseases (rCTDs). Patient participation and involvement, also through EURORDIS, is a key characteristic of ERNs. Objectives: To demonstrate that patients’ involvement and collaboration across disease and geographic borders via the ERN ReCONNET effectively brings better care for people living with rCTDs. Methods: The European Patient Advocacy Groups (ePAGs) provide patients’ opinion and input in all activities of the ERN. They relay the views of their wider communities, evaluate how the ERN acts on patients input, contribute to projects and research, develop and disseminate patients’ information, ensure that patient rights and choices are taken into account in decision-making and identify national groups to work with the ERN’s HCPs. To structure the patients’ involvement, a Patients’ Organizations Working Group led by a Senior and a Junior Coordinator, developed and approved its own Terms of Reference. Patients’ Representative Disease Coordinator (PDR) have been identified for most diseases. They bring patient perspective, liaise with HCPs and their wider patient community. Three ePAGs are voting members of the Steering Committee. Results: ePAGs have collaborated intensely in ERN activities, organising and participating to regular meetings, providing their input into projects. They co-designed and disseminated surveys on clinical practice guidelines and on patient education. In each disease area, they collected feedback from their community on topics such as unmet needs or therapeutic education, worked alongside HCPs on narrative reviews2, abstracts, surveys and reviews of the literature2. Lay language versions of documentation enable the wider community to understand the efforts of ERN ReCONNET, of which the ePAGs form an essential part. ePAG’s involvement in the ERN has brought perspective for the future, identifying common surveys for next year, providing input on therapeutic educational programs or preparing patient journey documentation. A project to certify websites information quality on ReCONNET diseases and disorders was approved during the last meeting. From 10 ePAGs invited at the EMA symposium on clinical trials, 2 were from ReCONNET. Conclusion: The ERN ReCONNET is a great opportunity for patients’ leadership, bridging from EULAR and its PRP program to ERN and other EU initiatives. It will make a tremendous impact on the EU diagnostic and treatment landscape bringing a better quality of life to people with rCTDs. References [1] https://ec.europa.eu/health/ern_enTi [2] https://rmdopen.bmj.com/content/4/Suppl_1 Acknowledgement: on behalf of the ERN ReCONNET European Patient Advocacy Group Disclosure of Interests: Alain Cornet Grant/research support from: No direct financial grants from Pharmaceutical companies, but some grants accrued LUPUS EUROPE does, in the form of Grants or payment for attending advisory boards or providing patient views, Speakers bureau: I have been involved in GSK panels to provide patient perspective. However, the minor service fee obtained accrued to LUPUS EUROPE ratyher than the company, Charissa Hermine Frank: None declared, Ilaria Galetti: None declared, Jorgen Grunert: None declared, vera guimaraes: None declared, lisa matthews: None declared, Sander Otter: None declared, Ana Vieira: None declared

Background: The ERN ReCONNET (European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases) is the ERN aimed at improving the management of Rare Connective Tissue and Musculoskeletal Diseases across the European Union (EU). The ERN ReCONNET involves 26 health care providers (HCPs), from eight different EU countries: Belgium, France, Germany, Italy, the Netherlands, Portugal, Romania, Slovenia and 7 european Patient Advocacy Group (ePAGs). An intense collaboration has been established between HCPs and ePAGs. Patient Education (PE) was defined in 1998 by the World Health Organization as a continuous process including organized awareness information, self-care learning and psychological support regarding the disease, treatment, care and health care setting. It is designed to help patients to maintain or improve their quality of life with specific PE programmes designed to help them acquiring new skills. Objectives: To evaluate PE practice in the ERN ReCONNET based on a survey send to the HCPs members and to the patients of the corresponding countries. Methods: A questionnaire designed on a google form was send to the HCPs members asking about their practices in PE in their department and an other one was send to ePAGs who translated the patients’ survey in the different languages. Various versions of the same questionnaire was then send to patients’ associations in the different countries. Results: 33 HCPs members or representatives answered the survey. 52.9% (18) had no specific staff members dedicated to PE. In the department with staff trained in patient education, 33% (4) had no specific PE programmes. In the HCPs with dedicated staff for PE, 83.3% (10) estimated care providers are insufficient to meet the patients’ needs. 1608 patients answered the patient survey (France, n=246; Germany, n=23; Italy, n=500; Portugal, n=339; Slovenia, n=240; Belgium, n=190; the Netherlands, n=42), mostly women (84,5%, n=1359), around 48,5 years old (SD=13,6). Patients suffered mostly from Connective Tissue Diseases and Ehler-Danlos disease. 68%% (1093) of the patients had never heard about PE and were for 74% (804) interested in taking part in a PE programme. In the remaining patients who had heard about PE, 66% (342) never took part in a programme. For patients who had already taken part in a PE programme, they expressed satisfaction in several domains listed in the following bar chart: For all respondents, patients expressed needs for a better knowledge in disease and symptoms, treatments, well-being, nutrition, exchanging experiences with other patients, and daily life with the disease. Conclusion: Based on the EULAR recommendations for PE (Zangi HA et al.), PE should be apply in all EU countries. E-learning on PE for staff members and ePE for patients will be developed by the ERN ReCONNET. Reference [1] Zangi HA, Ndosi M, Adams J, Andersen L, Bode C, Bostrom C, Van Eijk-Hustings Y, Gossec L, Korandova J, Mendes G, Niedermann K, Primdahl J, Stoffer M, Voshaar M, van Tubergen A; European League Against Rheumatism (EULAR). EULAR recommendations for patient education for people with inflammatory arthritis. Ann Rheum Dis. 2015 Jun;74(6):954-62. doi: 10.1136 Disclosure of Interests: Meryem-Maud Farhat: None declared, Alain Cornet Grant/research support from: No direct financial grants from Pharmaceutical companies, but some grants accrued LUPUS EUROPE does, in the form of Grants or payment for attending advisory boards or providing patient views, Speakers bureau: I have been involved in GSK panels to provide patient perspective. However, the minor service fee obtained accrued to LUPUS EUROPE ratyher than the company, charissa frank: None declared, Ilaria Galetti: None declared, Juergen Grunert: None declared, vera guimaraes: None declared, lisa matthews: None declared, Ana Vieira: None declared, Eric Hachulla Consultant for: Received consulting fees or other remuneration from Actelion, GSK, Pfizer, and Bayer