62 research outputs found

    Transitional Care for Patients with Congenital Colorectal Diseases: An EUPSA Network Office, ERNICA, and eUROGEN Joint Venture

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    Background: Transition of care (TOC; from childhood into adulthood) of patients with anorectal malformations (ARM) and Hirschsprung disease (HD) ensures continuation of care for these patients. The aim of this international study was to assess the current status of TOC and adult care (AC) programs for patients with ARM and HD. Methods: A survey was developed by members of EUPSA, ERN eUROGEN, and ERNICA, including patient representatives (ePAGs), comprising of four domains: general information, general questions about transition to adulthood, and disease-specific questions regarding TOC and AC programs. Recruitment of centres was done by the ERNs and EUPSA, using mailing lists and social media accounts. Only descriptive statistics were reported. Results: In total, 82 centres from 21 different countries entered the survey. Approximately half of them were ERN network members. Seventy-two centres (87.8%) had a self-reported area of expertise for both ARM and HD. Specific TOC programs were installed in 44% of the centres and AC programs in 31% of these centres. When comparing centres, wide variation was observed in the content of the programs. Conclusion: Despite the awareness of the importance of TOC and AC programs, these programs were installed in less than 50% of the participating centres. Various transition and AC programs were applied, with considerable heterogeneity in implementation, content and responsible caregivers involved. Sharing best practice examples and taking into account local and National Health Care Programs might lead to a better continuation of care in the future. Level of Evidence: III

    Heliophysics and Amateur Radio:Citizen Science Collaborations for Atmospheric, Ionospheric, and Space Physics Research and Operations

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    The amateur radio community is a global, highly engaged, and technical community with an intense interest in space weather, its underlying physics, and how it impacts radio communications. The large-scale observational capabilities of distributed instrumentation fielded by amateur radio operators and radio science enthusiasts offers a tremendous opportunity to advance the fields of heliophysics, radio science, and space weather. Well-established amateur radio networks like the RBN, WSPRNet, and PSKReporter already provide rich, ever-growing, long-term data of bottomside ionospheric observations. Up-and-coming purpose-built citizen science networks, and their associated novel instruments, offer opportunities for citizen scientists, professional researchers, and industry to field networks for specific science questions and operational needs. Here, we discuss the scientific and technical capabilities of the global amateur radio community, review methods of collaboration between the amateur radio and professional scientific community, and review recent peer-reviewed studies that have made use of amateur radio data and methods. Finally, we present recommendations submitted to the U.S. National Academy of Science Decadal Survey for Solar and Space Physics (Heliophysics) 2024–2033 for using amateur radio to further advance heliophysics and for fostering deeper collaborations between the professional science and amateur radio communities. Technical recommendations include increasing support for distributed instrumentation fielded by amateur radio operators and citizen scientists, developing novel transmissions of RF signals that can be used in citizen science experiments, developing new amateur radio modes that simultaneously allow for communications and ionospheric sounding, and formally incorporating the amateur radio community and its observational assets into the Space Weather R2O2R framework. Collaborative recommendations include allocating resources for amateur radio citizen science research projects and activities, developing amateur radio research and educational activities in collaboration with leading organizations within the amateur radio community, facilitating communication and collegiality between professional researchers and amateurs, ensuring that proposed projects are of a mutual benefit to both the professional research and amateur radio communities, and working towards diverse, equitable, and inclusive communities

    A many-analysts approach to the relation between religiosity and well-being

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    The relation between religiosity and well-being is one of the most researched topics in the psychology of religion, yet the directionality and robustness of the effect remains debated. Here, we adopted a many-analysts approach to assess the robustness of this relation based on a new cross-cultural dataset (N=10,535 participants from 24 countries). We recruited 120 analysis teams to investigate (1) whether religious people self-report higher well-being, and (2) whether the relation between religiosity and self-reported well-being depends on perceived cultural norms of religion (i.e., whether it is considered normal and desirable to be religious in a given country). In a two-stage procedure, the teams first created an analysis plan and then executed their planned analysis on the data. For the first research question, all but 3 teams reported positive effect sizes with credible/confidence intervals excluding zero (median reported β=0.120). For the second research question, this was the case for 65% of the teams (median reported β=0.039). While most teams applied (multilevel) linear regression models, there was considerable variability in the choice of items used to construct the independent variables, the dependent variable, and the included covariates

    A Many-analysts Approach to the Relation Between Religiosity and Well-being

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    The relation between religiosity and well-being is one of the most researched topics in the psychology of religion, yet the directionality and robustness of the effect remains debated. Here, we adopted a many-analysts approach to assess the robustness of this relation based on a new cross-cultural dataset (N = 10, 535 participants from 24 countries). We recruited 120 analysis teams to investigate (1) whether religious people self-report higher well-being, and (2) whether the relation between religiosity and self-reported well-being depends on perceived cultural norms of religion (i.e., whether it is considered normal and desirable to be religious in a given country). In a two-stage procedure, the teams first created an analysis plan and then executed their planned analysis on the data. For the first research question, all but 3 teams reported positive effect sizes with credible/confidence intervals excluding zero (median reported β = 0.120). For the second research question, this was the case for 65% of the teams (median reported β = 0.039). While most teams applied (multilevel) linear regression models, there was considerable variability in the choice of items used to construct the independent variables, the dependent variable, and the included covariates

    A many-analysts approach to the relation between religiosity and well-being

    Get PDF
    The relation between religiosity and well-being is one of the most researched topics in the psychology of religion, yet the directionality and robustness of the effect remains debated. Here, we adopted a many-analysts approach to assess the robustness of this relation based on a new cross-cultural dataset (N=10,535 participants from 24 countries). We recruited 120 analysis teams to investigate (1) whether religious people self-report higher well-being, and (2) whether the relation between religiosity and self-reported well-being depends on perceived cultural norms of religion (i.e., whether it is considered normal and desirable to be religious in a given country). In a two-stage procedure, the teams first created an analysis plan and then executed their planned analysis on the data. For the first research question, all but 3 teams reported positive effect sizes with credible/confidence intervals excluding zero (median reported β=0.120). For the second research question, this was the case for 65% of the teams (median reported β=0.039). While most teams applied (multilevel) linear regression models, there was considerable variability in the choice of items used to construct the independent variables, the dependent variable, and the included covariates
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