803 research outputs found

    ‘Look, I have my ears open’: Resilience and early school experiences among children in an economically deprived suburban area in Ireland

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    Children from economically disadvantaged communities frequently lack the socio- emotional, cognitive and behavioural skills needed for successful early school adjustment. Assessments of early school experience often rely on parent and teacher perspectives, yet children’s views are essential to design effective, resilience-promoting school ecologies. This mixed methods study explored children’s appraisals of potential stressors in the first school year with 25 children from a disadvantaged suburban community in Ireland. School scenarios were presented pictorially (Pictorial Measure of School Stress and Wellbeing, or PMSSW), to elicit children’s perspectives on social ecological factors that enable or constrain resilience. Salient positive factors included resource provision, such as food, toys and books; school activities and routines, including play; and relationships with teachers. Negative factors included bullying; difficulties engaging with peers; and using the toilet. Drawing on these factors, we indicate how school psychologists can develop resilience-fostering educational environments for children in vulnerable communitie

    Pegademase bovine (PEG-ADA) for the treatment of infants and children with severe combined immunodeficiency (SCID)

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    Adenosine deaminase deficiency (ADA) is a rare, inherited disorder of purine metabolism characterized by immunodeficiency, failure to thrive and metabolic abnormalities. A lack of the enzyme ADA allows accumulation of toxic metabolites causing defects of both cell mediated and humoral immunity leading to ADA severe combined immune deficiency (SCID), a condition that can be fatal in early infancy if left untreated. Hematopoietic stem cell transplant is curative but is dependent on a good donor match. Other therapeutic options include enzyme replacement therapy (ERT) with pegademase bovine (PEG-ADA) and more recently gene therapy. PEG-ADA has been used in over 150 patients worldwide and has allowed stabilization of patients awaiting more definitive treatment with hematopoietic stem cell transplant. It affords both metabolic detoxification and protective immune function with patients remaining clinically well, but immune reconstitution is often suboptimal and may not be long lived. We discuss the pharmacokinetics, immune reconstitution, effects on systemic disease and side effects of treatment with PEG-ADA. We also review the long-term outcome of patients receiving ERT and discuss the role of PEG-ADA in the management of infants and children with ADA-SCID, alongside other therapeutic options

    Improving access to gene therapy for rare diseases

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    Effective gene therapy approaches have been developed for many rare diseases, including inborn errors of immunity and metabolism, haemoglobinopathies and inherited blindness. Despite successful pre-clinical and clinical results, these gene therapies are not widely available, primarily for non-medical reasons. Lack of commercial interest in therapies for ultra-rare diseases, costs of development and complex manufacturing processes required for advanced therapy medicinal products (ATMPs) are some of the main problems that are restricting access. The complexities and costs of navigating the regulatory environments in different jurisdictions for treatments that affect small numbers of patients is a problem unique to ATMPS for rare and ultra-rare diseases. In this Perspective, we outline some of the challenges and potential solutions that, we hope, will improve access to gene therapy for rare diseases

    Student loans: Who will be negatively impacted by the latest reforms?

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    A genome wide association scan for (1,3;1,4)-β-glucan content in the grain of contemporary 2-row Spring and Winter barleys

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    Published: 17 October 2014BACKGROUND: (1,3;1,4)-β-Glucan is an important component of the cell walls of barley grain as it affects processability during the production of alcoholic beverages and has significant human health benefits when consumed above recommended threshold levels. This leads to diametrically opposed quality requirements for different applications as low levels of (1,3;1,4)-β-glucan are required for brewing and distilling and high levels for positive impacts on human health. RESULTS: We quantified grain (1,3;1,4)-β-glucan content in a collection of 399 2-row Spring-type, and 204 2-row Winter-type elite barley cultivars originating mainly from north western Europe. We combined these data with genotypic information derived using a 9 K Illumina iSelect SNP platform and subsequently carried out a Genome Wide Association Scan (GWAS). Statistical analysis accounting for residual genetic structure within the germplasm collection allowed us to identify significant associations between molecular markers and the phenotypic data. By anchoring the regions that contain these associations to the barley genome assembly we catalogued genes underlying the associations. Based on gene annotations and transcript abundance data we identified candidate genes. CONCLUSIONS: We show that a region of the genome on chromosome 2 containing a cluster of CELLULOSE SYNTHASE-LIKE (Csl) genes, including CslF3, CslF4, CslF8, CslF10, CslF12 and CslH, as well as a region on chromosome 1H containing CslF9, are associated with the phenotype in this germplasm. We also observed that several regions identified by GWAS contain glycoside hydrolases that are possibly involved in (1,3;1,4)-β-glucan breakdown, together with other genes that might participate in (1,3;1,4)-β-glucan synthesis, re-modelling or regulation. This analysis provides new opportunities for understanding the genes related to the regulation of (1,3;1,4)-β-glucan content in cereal grains.Kelly Houston, Joanne Russell, Miriam Schreiber, Claire Halpin, Helena Oakey, Jennifer M Washington, Allan Booth, Neil Shirley, Rachel A Burton, Geoffrey B Fincher and Robbie Waug

    Australian Teachers’ Perceptions and Experiences of Food and Nutrition Education in Primary Schools: A Qualitative Study

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    Teacher delivered food and nutrition education (FNE) can be effective in improving children’s food literacy and eating habits. However, teachers are known to face some barriers to the delivery of FNE globally. To obtain a deeper understanding of Australian primary school teachers’ experiences and views, 17 teachers were interviewed. The results of the thematic analysis showed that teachers acknowledged the importance of FNE and were willing to include more FNE content into their teaching. We also identified the FNE topics taught, resources used, their teaching partners, and barriers encountered. The discussion presents strategies to overcome these barriers

    The REASONS Survey : resolved millimeter observations of a large debris disk around the nearby F Star HD 170773

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    Debris disks are extrasolar analogs to our own Kuiper Belt and they are detected around at least 17% of nearby Sun-like stars. The morphology and dynamics of a disk encode information about its history, as well as that of any exoplanets within the system. We used the Atacama Large Millimeter/submillimeter Array (ALMA) to obtain 1.3 mm observations of the debris disk around the nearby F5V star HD 170773. We image the face-on ring and determine its fundamental parameters by forward-modeling the interferometric visibilities through a Markov Chain Monte Carlo approach. Using a symmetric Gaussian surface density profile, we find a 71 ± 4 au wide belt with a radius of {193}-3+2 au, a relatively large radius compared with most other millimeter-resolved belts around late A/early F type stars. This makes HD 170773 part of a group of four disks around A and F stars with radii larger than expected from the recently reported planetesimal belt radius—stellar luminosity relation. Two of these systems are known to host directly imaged giant planets, which may point to a connection between large belts and the presence of long-period giant planets. We also set upper limits on the presence of CO and CN gas in the system, which imply that the exocomets that constitute this belt have CO and HCN ice mass fractions of <77% and <3%, respectively. This is consistent with solar system comets and other exocometary belts

    Does YSP Make You Happy? Investigating Situated Narratives of Wellbeing at the Yorkshire Sculpture Park

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    This thesis investigates the question ‘Does Yorkshire Sculpture Park make people happy?’ through a methodological approach which draws on critical epistemologies of situated lived experience, phenomenological approaches to landscape and aesthetic experience, participatory research paradigms and narrative inquiry. Using Yorkshire Sculpture Park (YSP) as a case study, this collaborative PhD project finds that the aesthetic and social encounters facilitated in its environment provide potential ways to wellbeing that have been underexplored in current literature on wellbeing in cultural organisations. The thesis proposes that wellbeing in an organisation needs to be considered from the ground up, rooted in the lived experiences of the communities that it serves. The research uncovers four distinct wellbeing narratives. Firstly, the organisational story of respite, creative learning and access to art experiences embedded within the founding mission of the YSP. Secondly, the biographical narratives of the visitors in which life events, family memories and new experiences are embedded within its landscape. Thirdly, the experiential, temporal narratives of experiencing sculpture in the landscape through the journeys around the park. Finally, the intersubjective sculpture stories collectively produced within the project. Through the collection and collation of these different narratives, it places the wellbeing experience in its biographical, temporal, spatial and social contexts in order to illuminate its specificity and contingency. It argues that the potential for wellbeing experiences to occur at YSP is contingent on particular environmental conditions, here proposed as two sets of axes between openness and safety and continuity and change. Furthermore, it suggests that it is the specific sociality constructed within the aesthetic encounter through which these experiences are made meaningful. In doing so, it offers an original contribution to knowledge for the study of the situated experiences of wellbeing within the aesthetic encounter, including its impact upon research and planning for wellbeing programming within an art gallery context and understandings of wellbeing in the cultural sector

    Examining sample representativeness and data quality in the linked Next Steps survey and Student Loans Company administrative data

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    Linked cohort and administrative data provide rich data resources with wide ranging research possibilities. Yet, it is important to understand the quality and representativeness of linked cohort and administrative data, in order to establish the reliability of estimates from these. At the Next Steps age 25 survey (2015/16) participants were asked for their consent to link their survey data to various administrative records. One of which was the Student Loans Company (SLC), who provided data for consenting participants on any student loan applications, payments, and repayments made across a fourteen-year period (from 2007-2021). We examined sample representativeness for the linked Next Steps-SLC data by comparing participant characteristics between those who did and did not consent to data linkage, for those who were and were not successfully linked, and relative to national population statistics where possible. Among age 25 respondents, certain groups were less likely to consent to data linkage, including those from ethnic minority groups and more disadvantaged backgrounds. In the limited instances where comparable national data was available, the linked sample was found to be reasonably representative of these wider populations. Data quality was examined by evaluating agreement between similar variables held across both sources, which on the whole, revealed a high level of agreement suggesting high data quality. Finally, a novel policy-relevant research question was investigated, to showcase some of the research possibilities of using this linked data. We conclude that future research should capitalise on this new linked data resource for investigating a range of outcomes among student loan borrowers but note that certain groups may be underrepresented in the linked data, due to differential linkage consent rates
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