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    159370 research outputs found

    Patient-led collaboration for HTA tools and evidence development: Project HERCULES

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    Health Technology Assessment (HTA) requires several disease-level inputs including a natural history model, quality of life and cost of illness evidence. In rare diseases there may be little published evidence, few clinical experts, and a limited pool of patients to develop these inputs. A patient-led collaborative approach to building tools and evidence for HTA can be effective and deliver high quality inputs to HTA that reflect patients’ perspectives and experiences. Duchenne UK’s Project HERCULES has delivered a disease level economic model, natural history model, a validated patient-reported outcome measure for health-related quality of life in multiple languages and projects to review healthcare resource utilisation and the cost of illness. This chapter describes how patient input was obtained alongside that of clinicians, technology developers, and decision makers to steer rigorous academic work. This was achieved through regular engagement with all stakeholders throughout the project, using patient expert input to identify where current methods were insufficient, set the scope of new work, provide input on emerging new methodological approaches, feedback on emerging results and and issues, and shape outputs

    A model for assessing maturity of hydrogen supply chain resilience: a complexity-inspired approach

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    This study presents a maturity model (MM) for supply chain resilience management (SCRM) in the hydrogen sector, aimed at identifying resilience gaps and guiding improvements. The model is developed using an iterative approach combining literature review, expert interviews, and case studies. Grounded in design science research and complex adaptive systems (CAS) theory, the MM supports building adaptable, scalable supply chains that can manage regulatory shifts and industry transitions. Case study findings reveal that the development of SCRM maturity in the upstream hydrogen sector is constrained by downstream uncertainties and fragmented market mechanisms. Vertical integration across the supply chain significantly enhances hydrogen supply chain resilience. The MM offers a structured approach for hydrogen companies to improve response capabilities and apply scalable, strategy-aligned resilience measures. Theoretically, it advances understanding of CAS dynamics in SCRM. Practically, it provides managers with actionable guidance for implementing resilience strategies across the industry

    Decolonizing green chemistry research through Matharu plots

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    Research decolonization is necessary to forge diverse workspaces and foster equitable opportunities for underrepresented populations in science. The prevailing power structures in which the scientific enterprise operates are deeply rooted in colonial frameworks, perpetuating bias and discrimination towards people from the Global South. Therefore, there is an urgent need to dismantle these systemic disparities. Change must start at the educational level.. In this work, we introduce the concept of a Matharu Plot as an example of a practical and impactful tool to generate critical discussions and drive tangible change towards decolonized and inclusive research.. A Matharu Plot is a one-page infographic that shows the geographical distribution of cited research with an accompanying narrative. A Matharu Plot highlights any potential biases that may be inheent during literature and thus, facilitates a shift in mindset towards inclusive, decolonized research. . Matharu Plots can be easily integrated into undergraduate, masters, and doctoral-level chemistry curricula, as well as any other academic discipline, serving as a versatile and transformative resource that advances equitable chemical education in sustainability

    Estimating the global burden of viable Mycobacterium tuberculosis infection: a mathematical modelling study

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    Background Estimating the proportion of individuals currently infected with Mycobacterium tuberculosis (Mtb) is key for informing global health policies. Although a substantial portion of the global population exhibit tuberculous immunoreactivity, not all have a viable Mtb infection. Moreover, individuals with recent infections are at a higher risk of developing tuberculosis (TB). Here, we present estimates of the global burden of viable Mtb infection, using new insights into the natural history of TB. Methods and findings We constructed country-specific trends in annual risk of infection considering estimates of TB burden, immunoreactivity reversion, and age-specific mixing. We applied these trends to a deterministic mathematical model incorporating reinfection and self-clearance to estimate recent (within 2 years) and total viable Mtb infections. Empirical data on self-clearance are limited, so rates were informed by modelling estimates. In 2022, we estimated that 133.7 million people (95% uncertainty interval [UI]: 104.0, 171.1) had a recent Mtb infection, representing 1.7% (95% UI: 1.3, 2.2) of the global population. In total, 288.9 million people (95% UI: 242.2, 342.7)—or 3.7% (95% UI: 3.1, 4.3) globally—were estimated to harbour a viable Mtb infection. Among those recently infected, 12.0% (95% UI: 11.4, 12.7) were children under 15 years of age. Most recent infections were found in the World Health Organization regions of South-East Asia (49.0%; 95% UI: 37.2, 62.4), the Western Pacific (19.7%; 95% UI: 12.6, 30.5), and Africa (17.9%; 95% UI: 12.9, 24.1). India, Indonesia, and China had the highest burden, with 39.1 million (95% UI: 18.0, 73.6), 12.0 million (95% UI: 5.8, 22.9), and 11.2 million (95% UI: 5.0, 25.5) people, respectively, recently infected with Mtb. Sensitivity analyses of varying self-clearance scenarios showed significant changes in global estimates of viable Mtb infection, particularly in total burden, with lower self-clearance rates. Overall uncertainty in the estimates was considerable, reflecting limitations in the underlying data informing key model parameters. Conclusions Our findings offer global burden estimates of viable Mtb infection and reveal a sizable population recently infected with Mtb and at high risk of progression to disease. New diagnostic tools that can detect individuals with viable Mtb—particularly those who would benefit from TB preventive therapy—are urgently needed

    Atmospheric and hydrospheric characteristics in contrasting Arctic and intracontinental regions of Northern Eurasia and possible mutual influences

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    Floods and droughts have increased in Northern Eurasia, probably caused by hydrological changes in other regions. We explore such hypothetical teleconnections by investigating environmental changes in two contrasting harsh environments: the Arctic Kara Sea and the arid Aral–Caspian region. Using long-term data from daily remote microwave sensing, we describe seasonal dynamics of temperature and moisture regimes in the two regions and hypothesize their inter-relationships from new analyses of wind data. For the first time, daily L-band satellite data were used to determine open water in the Kara Sea and long-term seasonal dynamics of brightness temperatures were used to relate variations in the ongoing aridization of the Aral Sea area and abnormal spring floods in the south of Western Siberia. Using soil moisture and Ocean Salinity satellite data, we discovered a previously unrecorded 4-year cyclicity of open-water periods for the Arctic seas and northern parts of the Caspian and Aral Seas. This cyclicity could impact climate forecasting in Northern Eurasia with significant societal implications. The main aim of this paper is to present new analyses that suggest possible mechanisms for teleconnections between the two contrasting harsh environments of Northern Eurasia. The hypothetical teleconnections now need to be tested

    Becoming Non-Religious: Exploring the Emotional Experiences of Apostasy and Refugee Status Determination.

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    Leaving religion is a profoundly emotional process that is experienced and expressed in various ways. Those labelled as ‘apostates’ (individuals who leave a religion) in societies with restrictions on blasphemy and/or apostasy undergo a particularly unique experience, yet their accounts remain absent in research on non-religion and forced migration. This paper aims to address this gap by foregrounding the role of emotion across three stages of the refugee journey: leaving a religion in societies with restrictions on Freedom of Religion or Belief (FoRB), the challenges in proving apostasy during Refugee Status Determination (RSD) procedures, and the dynamics of belonging, identity, and recognition after asylum. Drawing on qualitative analysis of international human rights law, Home Office asylum policies, and interviews with both individuals with lived experience of seeking asylum in the UK (n = 12) and human rights advocates (n = 22), this study shows how fear, grief and relief shape (non-)religious identity construction. The findings suggest that these emotional dynamics, coupled with complex identity reconstructions, create inherent risks for successful bureaucratic recognition. By exploring these affective dimensions, this paper offers insights into how non-religious refugees construct their identities and the shortcomings of RSD processes for claims of apostasy. These findings connect the fields of non-religion and forced migration, which are often treated as separate, to deepen scholarly understanding of the process of becoming non-religious. In doing so, it emphasises the need for asylum systems to better engage with the lived realities of apostasy

    The shape of Bigfoot: transmuting absences into credible knowledge claims

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    Bigfoot exists. If not as a biological creature, then as a cultural object about which people know with a high degree of stability. It also exists as an object which some people organise their lives around. Those who collect evidence of Bigfoot’s existence as a biological creature are known as Bigfooters. Among the most persuasive forms of evidence that they collect are witness accounts of encounters with Bigfoot. Since the 1960s, there have been organised efforts to collect and sort these accounts; for example, thousands are now available online through the Bigfoot Field Researchers Organization (BFRO). Notably, many Bigfooters report that it was an encounter of their own which was the catalyst for them to get actively involved in this research. The article is part of a larger project examining the epistemic community of Bigfooting, which has involved 166 semi-structured interviews with people involved in Bigfooting and the subject of Bigfoot. These interviews explore the way in which Bigfooters make and contest knowledge, and during these interviews scores of participants shared personal tales of their own close encounters. We add to the work in the sociology of mystery by exploring the ways in which these stories are used to make knowledge claims. We argue that these stories ‘make room’ for Bigfoot by constructing an absence which can then be filled by what we know to be the ‘shape’ of Bigfoot, literally and figuratively. We also show how our interviewees present themselves as legitimate interpreters of these absences; when making an incredible claim in a field known for hoaxes, there is an imperative to be seen as credible and not credulous

    Organic geochemical investigations of an MIS 5 fire in the Palaeolithic deposits of Ormesson (Seine-et-Marne, France):Anthropic or natural?

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    Despite the central role of fire in Pleistocene and Palaeolithic lifeways, the relationship among hominins, fire, and their environment remains unclear. Ancient combustion residues hold a wealth of molecular data that may help to resolve some of these questions, yet standardised guidelines for reconstructing past fire traces are notably lacking. In this study, we examine extensive combustion residues overlying Middle Palaeolithic deposits from the open-air site of Ormesson (France). To determine whether the combustion residues are of natural or human origin, multiproxy approaches including anthracology, lipid biomarker, and benzene polycarboxylic acid (BPCA) analyses are applied. These techniques are used to characterise organic matter and pyrogenic carbon compositions in the deposits, providing insights into surrounding vegetation, palaeoenvironmental shifts, and the production parameters involved in the formation of the char assemblage. Lipid biomarker evidence suggests that the pre-fire local environment featured abundant coniferous vegetation (e.g., Pinaceae taxa), which is supported by anthracological evidence for a predominance of Pinus cf. sylvestris/nigra complemented by Betula sp. taxa. The post-fire environment saw a contraction of coniferous vegetation, concurrent with an expansion of deciduous taxa, grasses and herbaceous material. The combustion event, which resulted in 67 % of the charcoal assemblage exhibiting vitrification, produced PyC contents of up to 362 g/kg OC in soil samples and 443 g/kg OC in charcoal samples, with aromatic condensation values of up to 34 %. BPCA-derived predictions of heat treatment temperatures yielded values of approximately 300–400 °C for charcoal samples and 400–550 °C for soil samples in the burned layer, constituting the first instance in which quantitative temperature estimations are obtained from BPCA results. Based on the integrated evidence, we accept the null hypothesis that the studied combustion residues are natural in origin. However, the similarity of archaeometric and geochemical signatures from natural and human-controlled fires underscores the need for interdisciplinary, multiproxy efforts to improve the identification of past fire regimes

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