20 research outputs found

    Barriers and Facilitators of Access to Early Intervention for Families With Children With Developmental Disabilities

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    Early identification and early intervention (EI) is important for families of children with developmental disabilities (DD). Access to EI has been shown to improve a range of child and family outcomes and is advocated in international policy. However, there are significant concerns regarding both the timeliness and levels of access to EI. The present review aimed to identify barriers and facilitators of access to EI. Methods: A literature review of research on the identification of needs and access to EI for families of children with DD was conducted. A general pathway of accessing EI, depicting the logical sequence of accessing support, was used to synthesise evidence on barriers and facilitators of access across three key phases: recognition of potential need; screening and/or formal identification of need; and access to EI. Results: Various factors which influenced the process of accessing EI were identified, such as system-wide processes, service design, referral procedures, funding streams, policies, and characteristics of the child, family and clinicians. Factors identified acted as barriers, facilitators, or modifiers of the process of accessing EI. Implications: Our results indicate that multiple factors appear to influence access to EI. Implications for the provision of EI and support for families of children with DD will be discussed in relation to facilitating access for families

    Alliance of Genome Resources Portal: unified model organism research platform

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    The Alliance of Genome Resources (Alliance) is a consortium of the major model organism databases and the Gene Ontology that is guided by the vision of facilitating exploration of related genes in human and well-studied model organisms by providing a highly integrated and comprehensive platform that enables researchers to leverage the extensive body of genetic and genomic studies in these organisms. Initiated in 2016, the Alliance is building a central portal (www.alliancegenome.org) for access to data for the primary model organisms along with gene ontology data and human data. All data types represented in the Alliance portal (e.g. genomic data and phenotype descriptions) have common data models and workflows for curation. All data are open and freely available via a variety of mechanisms. Long-term plans for the Alliance project include a focus on coverage of additional model organisms including those without dedicated curation communities, and the inclusion of new data types with a particular focus on providing data and tools for the non-model-organism researcher that support enhanced discovery about human health and disease. Here we review current progress and present immediate plans for this new bioinformatics resource

    Alliance of Genome Resources Portal: unified model organism research platform

    Get PDF
    The Alliance of Genome Resources (Alliance) is a consortium of the major model organism databases and the Gene Ontology that is guided by the vision of facilitating exploration of related genes in human and well-studied model organisms by providing a highly integrated and comprehensive platform that enables researchers to leverage the extensive body of genetic and genomic studies in these organisms. Initiated in 2016, the Alliance is building a central portal (www.alliancegenome.org) for access to data for the primary model organisms along with gene ontology data and human data. All data types represented in the Alliance portal (e.g. genomic data and phenotype descriptions) have common data models and workflows for curation. All data are open and freely available via a variety of mechanisms. Long-term plans for the Alliance project include a focus on coverage of additional model organisms including those without dedicated curation communities, and the inclusion of new data types with a particular focus on providing data and tools for the non-model-organism researcher that support enhanced discovery about human health and disease. Here we review current progress and present immediate plans for this new bioinformatics resource

    Developing a logic model to guide evaluation of impact for learning disability projects: the case of the Positive Behavioural Support (PBS) Academy

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    Purpose: Measuring “impact” is an important aspect of the dissemination of evidence-based practice and relevant to all disciplines. However, it has only recently become a focus of enquiry and is not commonly directly researched within the learning disabilities field. The purpose of this paper is to describe the process of developing a logic model for the UK Positive Behavioural Support (PBS) Academy as part of an evaluation and impact study of its work to date. Design/methodology/approach: Logic models are a visual representation of the relationship between a project’s resources, activities and outputs and identified outcomes, in relation to key stakeholder groups. This representation allows for key impact measures to be identified and can be a useful tool for evaluation purposes. The authors used the process outlined by McLaughlin and Jordan (1998) to develop a bespoke logic model for the PBS Academy. Findings: The model was particularly helpful in making clear the distinction between output and impact, identifying impact criteria differentiated by stakeholder group and across time scales, and highlighting areas of activity that are needed to increase the impact of the work of the PBS Academy in the longer term. Originality/value: In the absence of any generalised impact evaluation frameworks in the learning disabilities field, the authors suggest that logic models may provide a useful framework for evaluating the impact of policy, practice, and research interventions

    Assessing the impact of the UK Positive Behavioural Support (PBS) Academy: An internet survey

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    Background: The Positive Behavioural Support (PBS) Academy is a collective of organisations and individuals in the UK working together to promote PBS as a framework for working with children and adults with intellectual disabilities who are at risk of behaviour that challenges. This paper presents a stakeholder perspective of the activities of the PBS Academy as part of an overall evaluation and impact study of its work to date. Methods and materials: The study used an internet-based survey designed by the authors and members of the PBS Academy. Results: Over one third of participants rated the activities of the PBS Academy as being done 'well' or 'very well' and the resources developed by the Academy were rated as 'useful' or 'very useful' by over 70% of participants for all but one resource. The most frequently used resources were the PBS Competence Framework and the International Journal of Positive Behavioural Support (IJPBS) 2013 special edition articles by Gore et al and Hastings et al. The PBS Academy was rated as having done less well in bringing stakeholders together to share practice. Conclusions: The results suggest that there is a role for a national body for PBS in the UK, with a focus on facilitation and enablement, especially in relation to workforce and individual professional and service development

    Elevated Markers of Vascular Remodeling and Arterial Stiffness Are Associated With Neurocognitive Function in Older HIV+ Adults on Suppressive Antiretroviral Therapy.

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    BackgroundHIV is associated with elevated markers of vascular remodeling that may contribute to arterial fibrosis and stiffening and changes in pulse pressure (PP). These changes may, in turn, deleteriously affect autoregulation of cerebral blood flow and neurocognitive function.MethodsTo evaluate these mechanisms, we studied markers of vascular remodeling, PP, and neurocognitive function among older (≥50 years of age) HIV-infected (HIV+, n = 72) and HIV-seronegative (HIV-, n = 36) adults. Participants completed standardized neurobehavioral and neuromedical assessments. Neurocognitive functioning was evaluated using a well-validated comprehensive battery. Three plasma biomarkers of vascular remodeling (ie, angiopoietin 2, Tie-2, and vascular endothelial growth factor, VEGF) were collected.ResultsHIV+ and HIV- participants had similar levels of plasma angiopoietin 2 (P = 0.48), Tie-2 (P = 0.27), VEGF (P = 0.18), and PP (P = 0.98). In a multivariable regression model, HIV interacted with Tie-2 (β = 0.41, P < 0.01) and VEGF (β = -0.43, P = 0.01) on neurocognitive function, such that lower Tie-2 and higher VEGF values were associated with worse neurocognitive function for HIV+ participants. Greater Tie-2 values were associated with increased PP (r = 0.31, P < 0.01). In turn, PP demonstrated a quadratic association with neurocognitive function (β = -0.33, P = 0.01), such that lower and higher, relative to mean sample, PP values were associated with worse neurocognitive function.ConclusionsThese findings indicate that vascular remodeling and altered cerebral blood flow autoregulation contribute to neurocognitive function. Furthermore, HIV moderates the association between vascular remodeling and neurocognitive function but not the association between PP and neurocognitive function
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