63 research outputs found

    Information in the personal collections of writers and artists: Practices, challenges and preservation

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    This publication is with permission of the rights owner (Sage) freely accessible.This article presents findings from interviews with 18 writers and artists in New Zealand, whose lives and work have potential heritage value. The objective was to investigate the perceived value of participants’ personal collections, the relevant management practices and challenges, and their potential effects on preservation and (re)use. The findings provide a characterisation of the personal information management (PIM) practices of writers and artists, revealed challenges common to organising personal collections across time and devices as well as those caused or increased by the nature of writers’ and artists’ work, and produce insights into the impact of perceived collection value and PIM practices on future access, preservation and (re)use of such collections.Victoria University of Wellington, New Zealand, University Research FundPeer Reviewe

    Information science and the inevitable: A literature review at the intersection of death and information management: An Annual Review of Information Science and Technology (ARIST) paper

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    Death is an inevitable part of life and highly relevant to information management: its approach often requires preparation, and its occurrence often demands a response. Many works in information science have acknowledged so much, and yet death is rarely a focused topic, appearing instead sporadically and disconnected across research. As a result there is no introduction to, overview of, or synthesis across studies on death and information. We therefore conducted an extensive literature search and reviewed nearly 300 scholarly publications at the intersection of death and information (and data) management. Covering seven topics in total, we review two groups of work directly engaging information management in relation to death (digital possessions, inheritance, and legacy; information behavior, needs, and practices around death), three engaging death and technology that require information and its management (death and the Internet, thanatosensitive design and technology-augmented death practices, and the digital afterlife and digital immortality), and two reflecting the ethical and legal dimensions unique to death and information. We then integrate the collective findings to summarize the landscape of death-related information research, outline remaining challenges for individuals, families, institutions, and society, and identify promising directions for future information science research.Peer Reviewe

    JÄÄKIEKKOILIJAN ENSIAPU: Ensiapuopas ja -koulutus jääkiekkoseuralle

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    Jesse Maja Sanna Santaoja Sini Svärd Jussi Viljanen Jääkiekkoilijan ensiapuopas - Ensiapuopas ja –koulutus jääkiekkoseuralle 25 sivua ja 3 liitettä Syksy, 2019 Diakonia-ammattikorkeakoulu Sosiaali- ja terveysalan ammattikorkeakoulututkinto Sairaanhoitaja AMK, Sairaanhoitaja-diakonissa AMK Opinnäytetyössämme tarkastelimme yleisimpiä jääkiekkovammoja, keskittyen niiden ensiaputoimiin. Työn keskiössä oli ensiapupäivä jääkiekkojoukkueelle sekä käyttöön jäävä ensiapuopas yleisimmistä, jääkiekkovammojen hoidosta. Ensiapupäivää ja -opasta suunnitellessamme kiinnitimme huomiota osallistujien jo olemassa oleviin ensiapuvalmiuksiin ja kohdensimme oman koulutuksemme vain jääkiekossa syntyviä vammoja käsitteleväksi kokonaisuudeksi. Vammojen ennaltaehkäisy on tärkeää, mutta vammautumisen tapahtuessa oikean ensiavun saaminen edesauttaa parantumista sekä ehkäisee lisävammojen syntyä. Vammojen ehkäisyn ja niiden oikean hoidon kautta, halusimme tukea nuorten terveyden edistämistä ja innostusta liikkumiseen. Ensiapupäivää suunnitellessamme keräsimme tietoa useilta eri tahoilta. Tarpeellista informaatiota saimme kerättyä, kun osallistuimme jääkiekkojoukkueen harjoituksiin, ensiapuiltaan sekä pääsimme haastattelemaan ison jääkiekkojoukkueen huollosta vastaavaa henkilöä.ABSTRACT In this thesis was discussed the typical ice hockey injuries concentrating on treatments. The main outcome was to create and implement a First Aid Day to a local ice hockey team and to produce a first aid guide which the players can use also in future. When planning the day and the guide, the attention was paid to the already existing first aid skills of the participants and targeted the training day to the injuries, which are the most common in ice hockey. Information was collected from many different faces during the first aid day planning process. Furthermore, important necessary information was gathered when participating in practice of the hockey team and their first aid course. A person who was the caretaker of a big hockey organisation was also inter-viewed for the study. The prevention of the injuries is important, but when the accident happens, the right kind of the first aid helps the recovery and healing process and prevents the development of additional injuries. Prevention of injuries and through their correct treatment, this study aimed at supporting youth’s health promotion and joy of movement. With this thesis, the authors wanted to support sport activities in a small local city

    Correction:Dutch Pharmacogenetics Working Group (DPWG) guideline for the gene–drug interaction between CYP2D6 and opioids (codeine, tramadol and oxycodone) (European Journal of Human Genetics, (2021), 10.1038/s41431-021-00920-y)

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    The Data statement was partly wrong and should have read as below. DATA AVAILABILITY All data and material are either included in the Supplementary information or publicly available (i.e., the published articles, PubMed). The guidelines and background information are available on the website of the Royal Dutch Pharmacists Association (KNMP) (Pharmacogenetic Recommendations. Available from: https://www.knmp.nl/). The guidelines and background information will be available on PharmGKB.org

    A Guide to the Brain Initiative Cell Census Network Data Ecosystem

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    Characterizing cellular diversity at different levels of biological organization and across data modalities is a prerequisite to understanding the function of cell types in the brain. Classification of neurons is also essential to manipulate cell types in controlled ways and to understand their variation and vulnerability in brain disorders. The BRAIN Initiative Cell Census Network (BICCN) is an integrated network of data-generating centers, data archives, and data standards developers, with the goal of systematic multimodal brain cell type profiling and characterization. Emphasis of the BICCN is on the whole mouse brain with demonstration of prototype feasibility for human and nonhuman primate (NHP) brains. Here, we provide a guide to the cellular and spatial approaches employed by the BICCN, and to accessing and using these data and extensive resources, including the BRAIN Cell Data Center (BCDC), which serves to manage and integrate data across the ecosystem. We illustrate the power of the BICCN data ecosystem through vignettes highlighting several BICCN analysis and visualization tools. Finally, we present emerging standards that have been developed or adopted toward Findable, Accessible, Interoperable, and Reusable (FAIR) neuroscience. The combined BICCN ecosystem provides a comprehensive resource for the exploration and analysis of cell types in the brain

    Assessing changes in global fire regimes

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    PAGES, Past Global Changes, is funded by the Swiss Academy of Sciences and the Chinese Academy of Sciences and supported in kind by the University of Bern, Switzerland. Financial support was provided by the U.S. National Science Foundation award numbers 1916565, EAR-2011439, and EAR-2012123. Additional support was provided by the Utah Department of Natural Resources Watershed Restoration Initiative. SSS was supported by Brigham Young University Graduate Studies. MS was supported by National Science Centre, Poland (grant no. 2018/31/B/ST10/02498 and 2021/41/B/ST10/00060). JCA was supported by the European Union’s Horizon 2020 research and innovation program under the Marie Skłodowska-Curie grant agreement No 101026211. PF contributed within the framework of the FCT-funded project no. UIDB/04033/2020. SGAF acknowledges support from Trond Mohn Stiftelse (TMS) and University of Bergen for the startup grant ‘TMS2022STG03’. JMP participation in this research was supported by the Forest Research Centre, a research unit funded by Fundação para a Ciência e a Tecnologia I.P. (FCT), Portugal (UIDB/00239/2020). A.-LD acknowledge PAGES, PICS CNRS 06484 project, CNRS-INSU, Région Nouvelle-Aquitaine, University of Bordeaux DRI and INQUA for workshop support.Background The global human footprint has fundamentally altered wildfire regimes, creating serious consequences for human health, biodiversity, and climate. However, it remains difficult to project how long-term interactions among land use, management, and climate change will affect fire behavior, representing a key knowledge gap for sustainable management. We used expert assessment to combine opinions about past and future fire regimes from 99 wildfire researchers. We asked for quantitative and qualitative assessments of the frequency, type, and implications of fire regime change from the beginning of the Holocene through the year 2300. Results Respondents indicated some direct human influence on wildfire since at least ~ 12,000 years BP, though natural climate variability remained the dominant driver of fire regime change until around 5,000 years BP, for most study regions. Responses suggested a ten-fold increase in the frequency of fire regime change during the last 250 years compared with the rest of the Holocene, corresponding first with the intensification and extensification of land use and later with anthropogenic climate change. Looking to the future, fire regimes were predicted to intensify, with increases in frequency, severity, and size in all biomes except grassland ecosystems. Fire regimes showed different climate sensitivities across biomes, but the likelihood of fire regime change increased with higher warming scenarios for all biomes. Biodiversity, carbon storage, and other ecosystem services were predicted to decrease for most biomes under higher emission scenarios. We present recommendations for adaptation and mitigation under emerging fire regimes, while recognizing that management options are constrained under higher emission scenarios. Conclusion The influence of humans on wildfire regimes has increased over the last two centuries. The perspective gained from past fires should be considered in land and fire management strategies, but novel fire behavior is likely given the unprecedented human disruption of plant communities, climate, and other factors. Future fire regimes are likely to degrade key ecosystem services, unless climate change is aggressively mitigated. Expert assessment complements empirical data and modeling, providing a broader perspective of fire science to inform decision making and future research priorities.Peer reviewe

    Locus for severity implicates CNS resilience in progression of multiple sclerosis

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    Multiple sclerosis (MS) is an autoimmune disease of the central nervous system (CNS) that results in significant neurodegeneration in the majority of those affected and is a common cause of chronic neurological disability in young adults(1,2). Here, to provide insight into the potential mechanisms involved in progression, we conducted a genome-wide association study of the age-related MS severity score in 12,584 cases and replicated our findings in a further 9,805 cases. We identified a significant association with rs10191329 in the DYSF-ZNF638 locus, the risk allele of which is associated with a shortening in the median time to requiring a walking aid of a median of 3.7 years in homozygous carriers and with increased brainstem and cortical pathology in brain tissue. We also identified suggestive association with rs149097173 in the DNM3-PIGC locus and significant heritability enrichment in CNS tissues. Mendelian randomization analyses suggested a potential protective role for higher educational attainment. In contrast to immune-driven susceptibility(3), these findings suggest a key role for CNS resilience and potentially neurocognitive reserve in determining outcome in MS

    Global Retinoblastoma Presentation and Analysis by National Income Level.

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    Importance: Early diagnosis of retinoblastoma, the most common intraocular cancer, can save both a child's life and vision. However, anecdotal evidence suggests that many children across the world are diagnosed late. To our knowledge, the clinical presentation of retinoblastoma has never been assessed on a global scale. Objectives: To report the retinoblastoma stage at diagnosis in patients across the world during a single year, to investigate associations between clinical variables and national income level, and to investigate risk factors for advanced disease at diagnosis. Design, Setting, and Participants: A total of 278 retinoblastoma treatment centers were recruited from June 2017 through December 2018 to participate in a cross-sectional analysis of treatment-naive patients with retinoblastoma who were diagnosed in 2017. Main Outcomes and Measures: Age at presentation, proportion of familial history of retinoblastoma, and tumor stage and metastasis. Results: The cohort included 4351 new patients from 153 countries; the median age at diagnosis was 30.5 (interquartile range, 18.3-45.9) months, and 1976 patients (45.4%) were female. Most patients (n = 3685 [84.7%]) were from low- and middle-income countries (LMICs). Globally, the most common indication for referral was leukocoria (n = 2638 [62.8%]), followed by strabismus (n = 429 [10.2%]) and proptosis (n = 309 [7.4%]). Patients from high-income countries (HICs) were diagnosed at a median age of 14.1 months, with 656 of 666 (98.5%) patients having intraocular retinoblastoma and 2 (0.3%) having metastasis. Patients from low-income countries were diagnosed at a median age of 30.5 months, with 256 of 521 (49.1%) having extraocular retinoblastoma and 94 of 498 (18.9%) having metastasis. Lower national income level was associated with older presentation age, higher proportion of locally advanced disease and distant metastasis, and smaller proportion of familial history of retinoblastoma. Advanced disease at diagnosis was more common in LMICs even after adjusting for age (odds ratio for low-income countries vs upper-middle-income countries and HICs, 17.92 [95% CI, 12.94-24.80], and for lower-middle-income countries vs upper-middle-income countries and HICs, 5.74 [95% CI, 4.30-7.68]). Conclusions and Relevance: This study is estimated to have included more than half of all new retinoblastoma cases worldwide in 2017. Children from LMICs, where the main global retinoblastoma burden lies, presented at an older age with more advanced disease and demonstrated a smaller proportion of familial history of retinoblastoma, likely because many do not reach a childbearing age. Given that retinoblastoma is curable, these data are concerning and mandate intervention at national and international levels. Further studies are needed to investigate factors, other than age at presentation, that may be associated with advanced disease in LMICs

    Impact of COVID-19 on cardiovascular testing in the United States versus the rest of the world

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    Objectives: This study sought to quantify and compare the decline in volumes of cardiovascular procedures between the United States and non-US institutions during the early phase of the coronavirus disease-2019 (COVID-19) pandemic. Background: The COVID-19 pandemic has disrupted the care of many non-COVID-19 illnesses. Reductions in diagnostic cardiovascular testing around the world have led to concerns over the implications of reduced testing for cardiovascular disease (CVD) morbidity and mortality. Methods: Data were submitted to the INCAPS-COVID (International Atomic Energy Agency Non-Invasive Cardiology Protocols Study of COVID-19), a multinational registry comprising 909 institutions in 108 countries (including 155 facilities in 40 U.S. states), assessing the impact of the COVID-19 pandemic on volumes of diagnostic cardiovascular procedures. Data were obtained for April 2020 and compared with volumes of baseline procedures from March 2019. We compared laboratory characteristics, practices, and procedure volumes between U.S. and non-U.S. facilities and between U.S. geographic regions and identified factors associated with volume reduction in the United States. Results: Reductions in the volumes of procedures in the United States were similar to those in non-U.S. facilities (68% vs. 63%, respectively; p = 0.237), although U.S. facilities reported greater reductions in invasive coronary angiography (69% vs. 53%, respectively; p < 0.001). Significantly more U.S. facilities reported increased use of telehealth and patient screening measures than non-U.S. facilities, such as temperature checks, symptom screenings, and COVID-19 testing. Reductions in volumes of procedures differed between U.S. regions, with larger declines observed in the Northeast (76%) and Midwest (74%) than in the South (62%) and West (44%). Prevalence of COVID-19, staff redeployments, outpatient centers, and urban centers were associated with greater reductions in volume in U.S. facilities in a multivariable analysis. Conclusions: We observed marked reductions in U.S. cardiovascular testing in the early phase of the pandemic and significant variability between U.S. regions. The association between reductions of volumes and COVID-19 prevalence in the United States highlighted the need for proactive efforts to maintain access to cardiovascular testing in areas most affected by outbreaks of COVID-19 infection
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