166 research outputs found
Ethical aspects of registry-based research in the Nordic countries
National health care registries in the Nordic countries share many attributes, but
different legal and ethical frameworks represent a challenge to promoting effective joint research.
Internationally, there is a lack of knowledge about how ethical matters are considered in Nordic
registry-based research, and a lack of knowledge about how Nordic ethics committees operate and
what is needed to obtain an approval. In this paper, we review ethical aspects of registry-based
research, the legal framework, the role of ethics review boards in the Nordic countries, and the
structure of the ethics application. We discuss the role of informed consent in registry-based
research and how to safeguard the integrity of study participants, including vulnerable subjects
and children. Our review also provides information on the different government agencies that
contribute registry-based data, and a list of the major health registries in Denmark, Finland,
Iceland, Norway, and Sweden. Both ethical values and conditions for registry-based research
are similar in the Nordic countries. While Denmark, Finland, Iceland, Norway, and Sweden have
chosen different legal frameworks, these differences can be resolved through mutual recognition
of ethical applications and by harmonizing the different systems, likely leading to increased
collaboration and enlarged studies
Earth system data cubes unravel global multivariate dynamics
Understanding Earth system dynamics in light of ongoing human intervention and dependency remains a major scientific challenge. The unprecedented availability of data streams describing different facets of the Earth now offers fundamentally new avenues to address this quest. However, several practical hurdles, especially the lack of data interoperability, limit the joint potential of these data streams. Today, many initiatives within and beyond the Earth system sciences are exploring new approaches to overcome these hurdles and meet the growing interdisciplinary need for data-intensive research; using data cubes is one promising avenue. Here, we introduce the concept of Earth system data cubes and how to operate on them in a formal way. The idea is that treating multiple data dimensions, such as spatial, temporal, variable, frequency, and other grids alike, allows effective application of user-defined functions to co-interpret Earth observations and/or model-data integration. An implementation of this concept combines analysis-ready data cubes with a suitable analytic interface. In three case studies, we demonstrate how the concept and its implementation facilitate the execution of complex workflows for research across multiple variables, and spatial and temporal scales: (1) summary statistics for ecosystem and climate dynamics; (2) intrinsic dimensionality analysis on multiple timescales; and (3) model-data integration. We discuss the emerging perspectives for investigating global interacting and coupled phenomena in observed or simulated data. In particular, we see many emerging perspectives of this approach for interpreting large-scale model ensembles. The latest developments in machine learning, causal inference, and model-data integration can be seamlessly implemented in the proposed framework, supporting rapid progress in data-intensive research across disciplinary boundaries. © 2020 Institute of Electrical and Electronics Engineers Inc.. All rights reserved
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Earth system data cubes unravel global multivariate dynamics
Understanding Earth system dynamics in light of ongoing human intervention and dependency remains a major scientific challenge. The unprecedented availability of data streams describing different facets of the Earth now offers fundamentally new avenues to address this quest. However, several practical hurdles, especially the lack of data interoperability, limit the joint potential of these data streams. Today, many initiatives within and beyond the Earth system sciences are exploring new approaches to overcome these hurdles and meet the growing interdisciplinary need for data-intensive research; using data cubes is one promising avenue. Here, we introduce the concept of Earth system data cubes and how to operate on them in a formal way. The idea is that treating multiple data dimensions, such as spatial, temporal, variable, frequency, and other grids alike, allows effective application of user-defined functions to co-interpret Earth observations and/or model-data integration. An implementation of this concept combines analysis-ready data cubes with a suitable analytic interface. In three case studies, we demonstrate how the concept and its implementation facilitate the execution of complex workflows for research across multiple variables, and spatial and temporal scales: (1) summary statistics for ecosystem and climate dynamics; (2) intrinsic dimensionality analysis on multiple timescales; and (3) model-data integration. We discuss the emerging perspectives for investigating global interacting and coupled phenomena in observed or simulated data. In particular, we see many emerging perspectives of this approach for interpreting large-scale model ensembles. The latest developments in machine learning, causal inference, and model-data integration can be seamlessly implemented in the proposed framework, supporting rapid progress in data-intensive research across disciplinary boundaries. © 2020 Institute of Electrical and Electronics Engineers Inc.. All rights reserved
Update on the diagnosis and treatment of neuromyelitis optica spectrum disorders (NMOSD) – revised recommendations of the Neuromyelitis Optica Study Group (NEMOS). Part II: Attack therapy and long-term management
Mapping 123 million neonatal, infant and child deaths between 2000 and 2017
Since 2000, many countries have achieved considerable success in improving child survival, but localized progress remains unclear. To inform efforts towards United Nations Sustainable Development Goal 3.2—to end preventable child deaths by 2030—we need consistently estimated data at the subnational level regarding child mortality rates and trends. Here we quantified, for the period 2000–2017, the subnational variation in mortality rates and number of deaths of neonates, infants and children under 5 years of age within 99 low- and middle-income countries using a geostatistical survival model. We estimated that 32% of children under 5 in these countries lived in districts that had attained rates of 25 or fewer child deaths per 1,000 live births by 2017, and that 58% of child deaths between 2000 and 2017 in these countries could have been averted in the absence of geographical inequality. This study enables the identification of high-mortality clusters, patterns of progress and geographical inequalities to inform appropriate investments and implementations that will help to improve the health of all populations
Estimating global injuries morbidity and mortality: methods and data used in the Global Burden of Disease 2017 study
BACKGROUND: While there is a long history of measuring death and disability from injuries, modern research methods must account for the wide spectrum of disability that can occur in an injury, and must provide estimates with sufficient demographic, geographical and temporal detail to be useful for policy makers. The Global Burden of Disease (GBD) 2017 study used methods to provide highly detailed estimates of global injury burden that meet these criteria. METHODS: In this study, we report and discuss the methods used in GBD 2017 for injury morbidity and mortality burden estimation. In summary, these methods included estimating cause-specific mortality for every cause of injury, and then estimating incidence for every cause of injury. Non-fatal disability for each cause is then calculated based on the probabilities of suffering from different types of bodily injury experienced. RESULTS: GBD 2017 produced morbidity and mortality estimates for 38 causes of injury. Estimates were produced in terms of incidence, prevalence, years lived with disability, cause-specific mortality, years of life lost and disability-adjusted life-years for a 28-year period for 22 age groups, 195 countries and both sexes. CONCLUSIONS: GBD 2017 demonstrated a complex and sophisticated series of analytical steps using the largest known database of morbidity and mortality data on injuries. GBD 2017 results should be used to help inform injury prevention policy making and resource allocation. We also identify important avenues for improving injury burden estimation in the future
Estimating global injuries morbidity and mortality : methods and data used in the Global Burden of Disease 2017 study
Background: While there is a long history of measuring death and disability from injuries, modern research methods must account for the wide spectrum of disability that can occur in an injury, and must provide estimates with sufficient demographic, geographical and temporal detail to be useful for policy makers. The Global Burden of Disease (GBD) 2017 study used methods to provide highly detailed estimates of global injury burden that meet these criteria. Methods: In this study, we report and discuss the methods used in GBD 2017 for injury morbidity and mortality burden estimation. In summary, these methods included estimating cause-specific mortality for every cause of injury, and then estimating incidence for every cause of injury. Non-fatal disability for each cause is then calculated based on the probabilities of suffering from different types of bodily injury experienced. Results: GBD 2017 produced morbidity and mortality estimates for 38 causes of injury. Estimates were produced in terms of incidence, prevalence, years lived with disability, cause-specific mortality, years of life lost and disability-adjusted life-years for a 28-year period for 22 age groups, 195 countries and both sexes. Conclusions: GBD 2017 demonstrated a complex and sophisticated series of analytical steps using the largest known database of morbidity and mortality data on injuries. GBD 2017 results should be used to help inform injury prevention policy making and resource allocation. We also identify important avenues for improving injury burden estimation in the future
Global injury morbidity and mortality from 1990 to 2017 : results from the Global Burden of Disease Study 2017
Correction:Background Past research in population health trends has shown that injuries form a substantial burden of population health loss. Regular updates to injury burden assessments are critical. We report Global Burden of Disease (GBD) 2017 Study estimates on morbidity and mortality for all injuries. Methods We reviewed results for injuries from the GBD 2017 study. GBD 2017 measured injury-specific mortality and years of life lost (YLLs) using the Cause of Death Ensemble model. To measure non-fatal injuries, GBD 2017 modelled injury-specific incidence and converted this to prevalence and years lived with disability (YLDs). YLLs and YLDs were summed to calculate disability-adjusted life years (DALYs). Findings In 1990, there were 4 260 493 (4 085 700 to 4 396 138) injury deaths, which increased to 4 484 722 (4 332 010 to 4 585 554) deaths in 2017, while age-standardised mortality decreased from 1079 (1073 to 1086) to 738 (730 to 745) per 100 000. In 1990, there were 354 064 302 (95% uncertainty interval: 338 174 876 to 371 610 802) new cases of injury globally, which increased to 520 710 288 (493 430 247 to 547 988 635) new cases in 2017. During this time, age-standardised incidence decreased non-significantly from 6824 (6534 to 7147) to 6763 (6412 to 7118) per 100 000. Between 1990 and 2017, age-standardised DALYs decreased from 4947 (4655 to 5233) per 100 000 to 3267 (3058 to 3505). Interpretation Injuries are an important cause of health loss globally, though mortality has declined between 1990 and 2017. Future research in injury burden should focus on prevention in high-burden populations, improving data collection and ensuring access to medical care.Peer reviewe
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