Rare diseases: nature, characteristics and biopsychosocial intervention

La definición estándar de enfermedad no es aplicable a las enfermedades raras, entre otras, por las siguientes razones: a) Existe una dificultad notable a la hora de clasificar estas enfermedades, b) Presentan inconvenientes metodológicos importantes cuando se investiga con muestras tan reducidas de sujetos, y c) Existe una variabilidad significativa de síntomas clínicos que dificulta el diagnóstico. Las enfermedades raras forman un conjunto amplio y variado de trastornos que afecta a un reducido número de personas. Mayoritariamente son genéticas, hereditarias, graves, incurables, degenerativas y con alta tasa de mortalidad. Un porcentaje alto cursa con retraso mental y alteraciones severas en el lenguaje y la cognición. La calidad de vida suele estar comprometida con pérdida de autonomía y representa una carga socio-sanitaria para las familias y el Estado, por ello se hace imprescindible la atención biopsicosocial, con la integración del/la trabajador/a social en las distintas fases de la intervención.___________________________________________________The standard definition of disease does not apply to rare diseases for the following reasons: a) there is a notable difficulty in classifying these diseases, b) there are significant methodological disadvantages in investigating small samples of subjects, and c) there is a significant variability of clinical symptoms, which makes diagnosis difficult. Rare diseases are a broad and varied group of disorders that affect a small number of people. Most of them are genetic, hereditary, serious, incurable, degenerative and with a high mortality rate. A high percentage presents mental deficiency and severe disorders in language and cognition. Quality of life is often related to loss of autonomy and represents a socio-sanitary burden for families and the State. Therefore, biopsychosocial care is essential together with the integration of social workers in the different stages of intervention

培训迁移的条件因素及迁移概率

The effects of in-service teacher training on the improvement of educational quality should be considered when rolling out professional development policies. To this end, important information can be gathered by examining the most relevant conditioning factors regarding the likelihood that teachers will successfully transfer learning into teaching practice. Knowledge of the effects of such transfer would also be useful. The aim of the present article is to analyse the existing associations between conditioning factors and the likelihood of transferring knowledge acquired via professional teacher training in non-university education classrooms. The present research was non-experimental and exploratory in nature, employing a survey in order to collect cross-sectional data. A total of 4769 teachers participated. A non-probabilistic convenience sample was recruited due to the accessibility and availability of participants. Obtained data enabled identification of predictive variables pertaining to the likelihood of transferring the knowledge attained through lifelong learning. A logistic regression model was developed to estimate transfer likelihood based on outcomes pertaining to the conditioning factors.El efecto de la formación continua del profesorado sobre la mejora de la calidad educativa es un indicador a tener en cuenta en el despliegue de políticas de desarrollo profesional. En este sentido, estudiar los factores condicionantes de mayor impacto sobre la probabilidad de que un docente tenga éxito en el proceso de transferencia y conocer el efecto de dicha asociación proporciona una información relevante. El objetivo de este artículo es analizar las asociaciones existentes entre los factores condicionantes y la probabilidad de que se produzca la transferencia al puesto de trabajo de los programas formativos destinados al profesorado de enseñanzas no universitarias. La investigación se ha diseñado como no experimental, con carácter exploratorio y en el que se emplea un instrumento tipo encuesta para la recogida de datos de carácter transversal. Han participado 4769 docentes, siendo el muestreo no probabilístico por conveniencia siguiendo el criterio de accesibilidad y disponibilidad de los sujetos. Los datos obtenidos han permitido identificar las variables predictivas de la probabilidad de transferir los productos de la formación permanente y proponer un modelo de regresión logística que estime dicha probabilidad en función a las puntuaciones de los factores condicionantes.O efeito da formação contínua dos professores na melhoria da qualidade educativa é um indicador a ter em conta na implementação de políticas de desenvolvimento profissional. Neste sentido, estudar os fatores condicionantes com maior impacto na probabilidade de sucesso de um professor no processo de transferência e conhecer o efeito desta associação proporciona informações relevantes. O objetivo deste artigo é analisar as associações existentes entre os fatores condicionantes e a probabilidade de transferência para o local de trabalho dos programas de formação destinados a professores de ensino não universitário. A investigação foi concebida como não experimental, com caráter exploratório e utilizando um instrumento de tipo inquérito para a recolha de dados transversais. Participaram 4769 professores, sendo a amostragem não-probabilística por conveniência seguindo o critério de acessibilidade e disponibilidade dos sujeitos. Os dados obtidos permitiram identificar as variáveis preditivas da probabilidade de transferência dos produtos da aprendizagem ao longo da vida e propor um modelo de regressão logística que estime esta probabilidade em função das pontuações dos fatores condicionantes.O efeito da formação contínua dos professores na melhoria da qualidade educativa é um indicador a ter em conta na implementação de políticas de desenvolvimento profissional. Neste sentido, estudar os fatores condicionantes com maior impacto na probabilidade de sucesso de um professor no processo de transferência e conhecer o efeito desta associação proporciona informações relevantes. O objetivo deste artigo é analisar as associações existentes entre os fatores condicionantes e a probabilidade de transferência para o local de trabalho dos programas de formação destinados a professores de ensino não universitário. A investigação foi concebida como não experimental, com caráter exploratório e utilizando um instrumento de tipo inquérito para a recolha de dados transversais. Participaram 4769 professores, sendo a amostragem não-probabilística por conveniência seguindo o critério de acessibilidade e disponibilidade dos sujeitos. Os dados obtidos permitiram identificar as variáveis preditivas da probabilidade de transferência dos produtos da aprendizagem ao longo da vida e propor um modelo de regressão logística que estime esta probabilidade em função das pontuações dos fatores condicionantes.为了提高教学质量而对教师进行的持续培训是职业发展政策部署时需要考虑在内的一项重要指标。因此，研究对教师培训迁移成功概率有重大影响的条件因素以及了解因素间的关联效果都可以为该课题提供宝贵的信息。本篇文章的主要目的既是分析条件因素间存在的关联，也是分析针对非大学教育阶段教师培训计划的职位迁移概率。该研究为非实验性的探索性研究，在研究中使用问卷类工具收集横截面数据。共有4769名教师参与，样本为非概率抽样，抽样过程中遵循对象的可及性和可用性标准。获得的数据允许我们确定了终身学习产品迁移概率的预测变量，同时也帮助我们提出了一个可以根据条件因素分值预估迁移概率的逻辑回归模型

Socio-economic potential impacts due to urban pluvial floods in Badalona (Spain) in a context of climate change

Pluvial flooding in Badalona (Spain) occurs during high rainfall intensity events, which in the future could be more frequent according to the latest report from the Intergovernmental Panel on Climate Change (IPCC). In this context, the present study aims at quantifying the potential impacts of climate change for the city of Badalona. A comprehensive pluvial flood multi risk assessment has been carried out for the entire municipality. The assessment has a twofold target: People safety, based on both pedestrians'' and vehicles'' stability, and impacts on the economic sector in terms of direct damages on properties and vehicles, and indirect damages due to businesses interruption. Risks and damages have also been assessed for the projected future rainfall conditions which enabled the comparison with the current ones, thereby estimating their potential increment. Moreover, the obtained results should be the first step to assess the efficiency of adaptation measures. The novelty of this paper is the integration of a detailed 1D/2D urban drainage model with multiple risk criteria. Although, the proposed methodology was tested for the case study of Badalona (Spain), it can be considered generally applicable to other urban areas affected by pluvial flooding

Análisis comparativo de diferentes aproximaciones para el estudio del proteoma de Saccharomyces cerevisiae

Comunicaciones a congreso

Materiales para la supervisión de las prácticas escolares en el grado de maestro: seminarios y tutorías = Materials for the supervision of the school training of teacher degree: seminars and tutorials

[SPA]En este trabajo nos centramos en el diseño de Seminarios y Tutorías dentro de las Prácticas Escolares (Grado de Maestro), atendiendo a espacios, tiempos, materiales y evaluación. Presentamos los materiales y recursos que nos van a permitir guiar el aprendizaje del alumno, así como contribuir a una evaluación formativa en el desarrollo de las competencias específicas de dichas prácticas. En el contexto universitario los Seminarios juegan un importante papel en el desarrollo de dichas prácticas y ofrecen unas directrices comunes que posibiliten una actuación semejante por parte de los distintos profesionales universitarios que supervisan las prácticas. Los materiales diseñados ayudan al tutor académico a planificar y llevar a término cada uno de los diferentes seminarios. También presentamos materiales dirigidos al alumnado que favorecen el aprovechamiento de dichos Seminarios. Por otra parte, desde la institución escolar, la Tutoría proporciona ayuda en el proceso de aprendizaje posibilitando la transformación de los aprendizajes académicos en competencias profesionales, a través del diálogo profesional con el estudiante, en base a unos materiales y recursos previamente formalizados. Desde este enfoque, la acción tutorial del maestro-tutor se convierte en un pilar clave de la formación inicial de los futuros profesionales en educación. [ENG]In this work we have focused in the desing of seminars and tutorials within School Training (Teacher Degree), we have considered spaces, times, materials and assessment. We show the materials and resources that will allow us to guide the learing student, as well as to contribute to the ability continuous assessment. In the university context, Seminars play an important role in the School Training development and they offer commun guidelines that make possible a similar action for the diferent professionals who supervise this practices. We have designed some materials which help to university tutor to planing and completing every diferent seminars. Also we presented materials for the students to contribute to seminars use. On the oder hand, from the school, the tutorial provide aid in the learning process making possible the transformation of the academic learnings in professional abilities, through a professional dialogue with the student based on materials and resources previusly formalized. From this approach the tutorial accion of teacher tutor becomes an important part of inicial training of the future Primary School Teachers.Campus Mare Nostrum, Universidad Politécnica de Cartagena, Universidad de Murcia, Región de Murci

Retinal-binding proteins mirror prokaryotic dynamics in multipond solar salterns

Microbial opsin (i.e. retinal-binding protein) dynamics has been studied along a salinity gradient in Santa Pola solar salterns (Alicante, Spain) by using culture-independent approaches and statistical analyses. Five ponds of salinities ranging from 18% to above 40% were sampled nine times along a year. Forty-three opsin-like sequences were retrieved by denaturing gradient gel electrophoresis and clustered into 18 different phylogroups, indicating that their diversity was higher than expected according to previous data. Moreover, the statistical correlation between environmental factors controlling microbial community structure and dynamics of environmental rhodopsin proteins indicated almost identical temporal fluctuations between the opsin-related sequences and their corresponding putative ‘producers’ in nature. Although most sequences were related to others previously detected in hypersaline environments, some pond-specific opsins putatively belonged to previously uncharacterized hosts. Furthermore, we propose that subtle changes in the bacteriorhodopsin ‘retinal proton binding pocket’, which is key in the photocycle function, could be the molecular basis behind a fine ‘photocycle-tuning’ mechanism to avoid inter/intraspecies light-competition in hypersaline environments.This work was supported by project CGL2012-39627-C03-01 of the Spanish Ministry of Economy and Competitiveness, which was also co-funded with FEDER support from the European Union

Creencias de los estudiantes de Educación Secundaria Obligatoria sobre la diversidad funcional

This article presents Compulsory Secondary Education students’ beliefs on functional diversity. The study adopted a mainly descriptive research design based on the administration of surveys to 442 adolescents between the ages of twelve and eighteen, both in the Region of Murcia and the Valencian Community. The results show that these adolescents, in having grown up in a society considered inclusive, have respectful and positive opinions regarding the integration in society of people with functional diversity. These opinions are linked, among other aspects, to the secondary school students attend and to their relationship with disability.En el presente trabajo se pretende dar a conocer las creencias que tienen los estudiantes de Educación Secundaria Obligatoria acerca de la diversidad funcional, a partir de un estudio principalmente de carácter descriptivo realizado mediante la técnica de encuesta aplicada a 442 adolescentes de entre doce y dieciocho años, tanto de la Región de Murcia como de la Comunidad Valenciana. Los resultados muestran que los adolescentes que han crecido en una sociedad considerada inclusiva tienen una opinión respetuosa y beneficiosa respecto a la integración de personas con diversidad funcional en la sociedad, si bien esta opinión está vinculada, entre otros aspectos, al centro en el que estudie o a la relación con la discapacidad

Socio-economic assessment of green infrastructure for climate change adaptation in the context of urban drainage planning

Green infrastructure (GI) contributes to improve urban drainage and also has other societal and environmental benefits that grey infrastructure usually does not have. Economic assessment for urban drainage planning and decision making often focuses on flood criteria. This study presents an economic assessment of GI based on a conventional cost-benefit analysis (CBA) that includes several benefits related to urban drainage (floods, combined sewer overflows and waste water treatment), environmental impacts (receiving water bodies) and additional societal and environmental benefits associated with GI (air quality improvements, aesthetic values, etc.). Benefits from flood damage reduction are monetized based on the widely used concept of Expected Annual Damage (EAD) that was calculated using a 1D/2D urban drainage model together with design storms and a damage model based on tailored flood depth–damage curves. Benefits from Combined Sewer Overflows (CSO) damage reduction were monetized using a 1D urban drainage model with continuous rainfall simulations and prices per cubic meter of spilled combined sewage water estimated from literature; other societal benefits were estimated using unit prices also estimated from literature. This economic assessment was applied to two different case studies: the Spanish cities of Barcelona and Badalona. The results are useful for decision making and also underline the relevancy of including not only flood damages in CBA of GI.This research was funded by the BINGO European H2020 project, Grant Agreement No.641739 and the RESCCUE European H2020 project, Grant Agreement No. 700174. The authors thank AMB, BCASA and the Municipalities of Badalona and Barcelona for their collaboration.Peer ReviewedPostprint (published version

Distribution and behaviour of striped dolphins in the southwestern Mediterranean Sea based on whale-watching data

The striped dolphin (Stenella coeruleoalba) is a cosmopolitan cetacean and the most commonly sighted dolphin in the Mediterranean Sea. It usually appears in groups of very different sizes, ranging from less than ten to more than 500 individuals, although it is usually found in groups of between 21 and 50 individuals. In the western Mediterranean, and more specifically in the Gulf of Mazarrón, S. coeruleoalba was the most frequently sighted cetacean during the 1042 whale-watching trips. The goal of this study was to establish the spatial and temporal distribution of striped dolphin sightings along the Gulf of Mazarrón between 2004 and 2014. Spatial patterns were analysed using a Random Forest based Species Distribution Model to estimate the presence of the species. Twentythree variables (three geographic, one temporal, eight geomorphometric and twelve oceanographic) were used as predictors. Out of the 1042 cruises, 872 records of striped dolphins were obtained. Some variations in the grouping patterns of these mammals were observed during the years 2006–2007, with an average shift in the size of the groups to fewer individuals (3−10). This variation is probably related to an epizootic event of morbillivirus occurring during those years, which was responsible for an abnormal rate of strandings of striped dolphins and long-finned pilot whales (Globicephala melas). The Random Forest model allowed to select 6 predictors related to morphometry and sea currents, suggesting the importance of specific habitat in offshore areas between 1000 and 3000 m depth in the continental slope.This research was supported by the Biodiversity Foundation of the Ministry for Ecological Transition and the Demographic Challenge “Optimización de la información para la mejora la planificación espacial marina en los cañones del Escarpe de Mazarrón, Seco de Palos y 'campo de pockmarks” (CAMONMAR3) [grant number FBIO18-01], through the EMFF PLEAMAR Programme