11 research outputs found

    The experiences of 33 national COVID-19 dashboard teams during the first year of the pandemic in the World Health Organization European Region: A qualitative study

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    Background: Governments across the World Health Organization (WHO) European Region have prioritised dashboards for reporting COVID-19 data. The ubiquitous use of dashboards for public reporting is a novel phenomenon. Objective: This study explores the development of COVID-19 dashboards during the first year of the pandemic and identifies common barriers, enablers and lessons from the experiences of teams responsible for their development. Methods: We applied multiple methods to identify and recruit COVID-19 dashboard teams, using a purposive, quota sampling approach. Semi-structured group interviews were conducted from April to June 2021. Using elaborative coding and thematic analysis, we derived descriptive and explanatory themes from the interview data. A validation workshop was held with study participants in June 2021. Results: Eighty informants participated, representing 33 national COVID-19 dashboard teams across the WHO European Region. Most dashboards were launched swiftly during the first months of the pandemic, February to May 2020. The urgency, intense workload, limited human resources, data and privacy constraints and public scrutiny were common challenges in the initial development stage. Themes related to barriers or enablers were identified, pertaining to the pre-pandemic context, pandemic itself, people and processes and software, data and users. Lessons emerged around the themes of simplicity, trust, partnership, software and data and change. Conclusions: COVID-19 dashboards were developed in a learning-by-doing approach. The experiences of teams reveal that initial underpreparedness was offset by high-level political endorsement, the professionalism of teams, accelerated data improvements and immediate support with commercial software solutions. To leverage the full potential of dashboards for health data reporting, investments are needed at the team, national and pan-European levels

    CCN3 modulates bone turnover and is a novel regulator of skeletal metastasis

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    The CCN family of proteins is composed of six secreted proteins (CCN1-6), which are grouped together based on their structural similarity. These matricellular proteins are involved in a large spectrum of biological processes, ranging from development to disease. In this review, we focus on CCN3, a founding member of this family, and its role in regulating cells within the bone microenvironment. CCN3 impairs normal osteoblast differentiation through multiple mechanisms, which include the neutralization of pro-osteoblastogenic stimuli such as BMP and Wnt family signals or the activation of pathways that suppress osteoblastogenesis, such as Notch. In contrast, CCN3 is known to promote chondrocyte differentiation. Given these functions, it is not surprising that CCN3 has been implicated in the progression of primary bone cancers such as osteosarcoma, Ewing’s sarcoma and chondrosarcoma. More recently, emerging evidence suggests that CCN3 may also influence the ability of metastatic cancers to colonize and grow in bone

    Identification of genetic variants associated with Huntington's disease progression: a genome-wide association study

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    Background Huntington's disease is caused by a CAG repeat expansion in the huntingtin gene, HTT. Age at onset has been used as a quantitative phenotype in genetic analysis looking for Huntington's disease modifiers, but is hard to define and not always available. Therefore, we aimed to generate a novel measure of disease progression and to identify genetic markers associated with this progression measure. Methods We generated a progression score on the basis of principal component analysis of prospectively acquired longitudinal changes in motor, cognitive, and imaging measures in the 218 indivduals in the TRACK-HD cohort of Huntington's disease gene mutation carriers (data collected 2008–11). We generated a parallel progression score using data from 1773 previously genotyped participants from the European Huntington's Disease Network REGISTRY study of Huntington's disease mutation carriers (data collected 2003–13). We did a genome-wide association analyses in terms of progression for 216 TRACK-HD participants and 1773 REGISTRY participants, then a meta-analysis of these results was undertaken. Findings Longitudinal motor, cognitive, and imaging scores were correlated with each other in TRACK-HD participants, justifying use of a single, cross-domain measure of disease progression in both studies. The TRACK-HD and REGISTRY progression measures were correlated with each other (r=0·674), and with age at onset (TRACK-HD, r=0·315; REGISTRY, r=0·234). The meta-analysis of progression in TRACK-HD and REGISTRY gave a genome-wide significant signal (p=1·12 × 10−10) on chromosome 5 spanning three genes: MSH3, DHFR, and MTRNR2L2. The genes in this locus were associated with progression in TRACK-HD (MSH3 p=2·94 × 10−8 DHFR p=8·37 × 10−7 MTRNR2L2 p=2·15 × 10−9) and to a lesser extent in REGISTRY (MSH3 p=9·36 × 10−4 DHFR p=8·45 × 10−4 MTRNR2L2 p=1·20 × 10−3). The lead single nucleotide polymorphism (SNP) in TRACK-HD (rs557874766) was genome-wide significant in the meta-analysis (p=1·58 × 10−8), and encodes an aminoacid change (Pro67Ala) in MSH3. In TRACK-HD, each copy of the minor allele at this SNP was associated with a 0·4 units per year (95% CI 0·16–0·66) reduction in the rate of change of the Unified Huntington's Disease Rating Scale (UHDRS) Total Motor Score, and a reduction of 0·12 units per year (95% CI 0·06–0·18) in the rate of change of UHDRS Total Functional Capacity score. These associations remained significant after adjusting for age of onset. Interpretation The multidomain progression measure in TRACK-HD was associated with a functional variant that was genome-wide significant in our meta-analysis. The association in only 216 participants implies that the progression measure is a sensitive reflection of disease burden, that the effect size at this locus is large, or both. Knockout of Msh3 reduces somatic expansion in Huntington's disease mouse models, suggesting this mechanism as an area for future therapeutic investigation

    Development and Actionability of the Dutch COVID-19 Dashboard: Descriptive Assessment and Expert Appraisal Study

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    Background: Web-based public reporting by means of dashboards has become an essential tool for governments worldwide to monitor COVID-19 information and communicate it to the public. The actionability of such dashboards is determined by their fitness for purpose-meeting a specific information need-and fitness for use-placing the right information into the right hands at the right time and in a manner that can be understood. Objective: The aim of this study was to identify specific areas where the actionability of the Dutch government's COVID-19 dashboard could be improved, with the ultimate goal of enhancing public understanding of the pandemic. Methods: The study was conducted from February 2020 to April 2021. A mixed methods approach was carried out, using (1) a descriptive checklist over time to monitor changes made to the dashboard, (2) an actionability scoring of the dashboard to pinpoint areas for improvement, and (3) a reflection meeting with the dashboard development team to contextualize findings and discuss areas for improvement. Results: The dashboard predominantly showed epidemiological information on COVID-19. It had been developed and adapted by adding more in-depth indicators, more geographic disaggregation options, and new indicator themes. It also changed in target audience from policy makers to the general public; thus, a homepage was added with the most important information, using news-like items to explain the provided indicators and conducting research to enhance public understanding of the dashboard. However, disaggregation options such as sex, socioeconomic status, and ethnicity and indicators on dual-track health system management and social and economic impact that have proven to give important insights in other countries are missing from the Dutch COVID-19 dashboard, limiting its actionability. Conclusions: The Dutch COVID-19 dashboard developed over time its fitness for purpose and use in terms of providing epidemiological information to the general public as a target audience. However, to strengthen the Dutch health system's ability to cope with upcoming phases of the COVID-19 pandemic or future public health emergencies, we advise (1) establishing timely indicators relating to health system capacity, (2) including relevant data disaggregation options (eg, sex, socioeconomic status), and (3) enabling interoperability between social, health, and economic data sources

    Abstracts of papers presented at the 9th Conference of the Weed Science Society of Israel Abstracts of papers presented at the 5th Conference of the Vegetable Virus Working Group of the International Society for Horticultural Science (ISHS), on Recent Advances in Vegetable Virus Research

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    Specific features of flax fibres used to manufacture composite materials

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    Proceedings of the 23rd Paediatric Rheumatology European Society Congress: part three

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    Suicidal ideation in a European Huntington's disease population.

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    Proceedings of the 23rd Paediatric Rheumatology European Society Congress: part one

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