Archivio della ricerca della Scuola Superiore Sant'Anna
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    26957 research outputs found

    A Research Agenda for EU Copyright Law

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    Global age-sex-specific all-cause mortality and life expectancy estimates for 204 countries and territories and 660 subnational locations, 1950–2023: a demographic analysis for the Global Burden of Disease Study 2023

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    Comprehensive, comparable, and timely estimates of demographic metrics—including life expectancy and age-specific mortality—are essential for evaluating, understanding, and addressing trends in population health. The COVID-19 pandemic highlighted the importance of timely and all-cause mortality estimates for being able to respond to changing trends in health outcomes, showing a strong need for demographic analysis tools that can produce all-cause mortality estimates more rapidly with more readily available all-age vital registration (VR) data. The Global Burden of Diseases, Injuries, and Risk Factors Study (GBD) is an ongoing research effort that quantifies human health by estimating a range of epidemiological quantities of interest across time, age, sex, location, cause, and risk. This study—part of the latest GBD release, GBD 2023—aims to provide new and updated estimates of all-cause mortality and life expectancy for 1950 to 2023 using a novel statistical model that accounts for complex correlation structures in demographic data across age and time. We used 24 025 data sources from VR, sample registration, surveys, censuses, and other sources to estimate all-cause mortality for males, females, and all sexes combined across 25 age groups in 204 countries and territories as well as 660 subnational units in 20 countries and territories, for the years 1950–2023. For the first time, we used complete birth history data for ages 5–14 years, age-specific sibling history data for ages 15–49 years, and age-specific mortality data from Health and Demographic Surveillance Systems. We developed a single statistical model that incorporates both parametric and non-parametric methods, referred to as OneMod, to produce estimates of all-cause mortality for each age-sex-location group. OneMod includes two main steps: a detailed regression analysis with a generalised linear modelling tool that accounts for age-specific covariate effects such as the Socio-demographic Index (SDI) and a population attributable fraction (PAF) for all risk factors combined; and a non-parametric analysis of residuals using a multivariate kernel regression model that smooths across age and time to adaptably follow trends in the data without overfitting. We calibrated asymptotic uncertainty estimates using Pearson residuals to produce 95% uncertainty intervals (UIs) and corresponding 1000 draws. Life expectancy was calculated from age-specific mortality rates with standard demographic methods. For each measure, 95% UIs were calculated with the 25th and 975th ordered values from a 1000-draw posterior distribution. In 2023, 60·1 million (95% UI 59·0–61·1) deaths occurred globally, of which 4·67 million (4·59–4·75) were in children younger than 5 years. Due to considerable population growth and ageing since 1950, the number of annual deaths globally increased by 35·2% (32·2–38·4) over the 1950–2023 study period, during which the global age-standardised all-cause mortality rate declined by 66·6% (65·8–67·3). Trends in age-specific mortality rates between 2011 and 2023 varied by age group and location, with the largest decline in under-5 mortality occurring in east Asia (67·7% decrease); the largest increases in mortality for those aged 5–14 years, 25–29 years, and 30–39 years occurring in high-income North America (11·5%, 31·7%, and 49·9%, respectively); and the largest increases in mortality for those aged 15–19 years and 20–24 years occurring in Eastern Europe (53·9% and 40·1%, respectively). We also identified higher than previously estimated mortality rates in sub-Saharan Africa for all sexes combined aged 5–14 years (87·3% higher in GBD 2023 than GBD 2021 on average across countries and territories over the 1950–2021 period) and for females aged 15–29 years (61·2% higher), as well as lower than previously estimated mortality rates in sub-Saharan Africa for all sexes combined aged 50 years and older (13·2% lower), reflecting advances in our modelling approach. Global life expectancy followed three distinct trends over the study period. First, between 1950 and 2019, there were considerable improvements, from 51·2 (50·6–51·7) years for females and 47·9 (47·4–48·4) years for males in 1950 to 76·3 (76·2–76·4) years for females and 71·4 (71·3–71·5) years for males in 2019. Second, this period was followed by a decrease in life expectancy during the COVID-19 pandemic, to 74·7 (74·6–74·8) years for females and 69·3 (69·2–69·4) years for males in 2021. Finally, the world experienced a period of post-pandemic recovery in 2022 and 2023, wherein life expectancy generally returned to pre-pandemic (2019) levels in 2023 (76·3 [76·0–76·6] years for females and 71·5 [71·2–71·8] years for males). 194 (95·1%) of 204 countries and territories experienced at least partial post-pandemic recovery in age-standardised mortality rates by 2023, with 61·8% (126 of 204) recovering to or falling below pre-pandemic levels. There were several mortality trajectories during and following the pandemic across countries and territories. Long-term mortality trends also varied considerably between age groups and locations, demonstrating the diverse landscape of health outcomes globally. This analysis identified several key differences in mortality trends from previous estimates, including higher rates of adolescent mortality, higher rates of young adult mortality in females, and lower rates of mortality in older age groups in much of sub-Saharan Africa. The findings also highlight stark differences across countries and territories in the timing and scale of changes in all-cause mortality trends during and following the COVID-19 pandemic (2020–23). Our estimates of evolving trends in mortality and life expectancy across locations, ages, sexes, and SDI levels in recent years as well as over the entire 1950–2023 study period provide crucial information for governments, policy makers, and the public to ensure that health-care systems, economies, and societies are prepared to address the world's health needs, particularly in populations with higher rates of mortality than previously known. The estimates from this study provide a robust framework for GBD and a valuable foundation for policy development, implementation, and evaluation around the world. Gates Foundation

    Towards a governance of technology transfer: fostering impact through goals, people, and resources

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    This study investigates the governance mechanisms that universities and Public Research Organizations (PROs) can implement to foster the impact of technology transfer initiatives. While maximizing the technology transfer impact has been widely explored both in research and practice, our understanding of the role that governance can play in this process remains limited. This paper addresses this gap by identifying specific governance mechanisms that universities and PROs can implement to achieve greater impact in their technology transfer initiatives. We performed a qualitative analysis of technology transfer professionals in the Italian context. We relied on interviews and secondary sources accessed through Netval, the National Association for Technology Transfer. Our findings reveal three critical governance levels: (i) the political level, which leverages goals as key elements, (ii) the relational level, which leverages people, and (iii) the technological level, which leverages resources. Drawing on goal setting, stakeholder, and resource dependence theories, we create a governance framework to maximize technology transfer impact. This study contributes to the governance literature by integrating and extending these three theories in the technology transfer domain, illustrating their interplay across political, relational, and technological governance levels. For each, we present a series of formal and informal governance mechanisms that universities and PROs should adopt to strengthen the societal and economic impact of their technology transfer initiatives

    A Wearable Pneumatic Platform to Automatically Assess Tactile Sensitivity

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    Sensory deficits caused by neurological disorders, i.e., loss of tactile sensitivity and/or limb proprioception, hinder object manipulation and precise movements, and ultimately lead to a significant slow-down in motor rehabilitation. Although sensory rehabilitation has been catching on more and more, current procedures for evaluating tactile sensitivity are still inefficient in terms of equipment portability, test execution time, and specific training required for healthcare personnel. While some automated tactile stimulation platforms have been developed for other applications, robotic systems designed to evaluate residual tactile sensitivity are still largely under explored. Here we propose a hand-wearable, pneumatically driven device, which exploits an air chamber to transmit contact forces to the user's fingertip by means of sliding pin, which can then be used to assess tactile sensitivity in a quantitative and reproducible manner. We tested the proposed platform on five healthy participants, and obtained pressure perception thresholds in the order of 0.01 bar, with a median of 0.03 bar, which showed a good correlation (p = 0.8441) with the SemmesWeinstein test. Although these results are preliminary, they suggest the potential of the proposed device as a complementary assessment tool of tactile sensitivity

    Six Ways IHL Protects Mental Health

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    The 2023 European Commission proposal and the 2024 European Parliament proposal for the EU pharmaceutical legislation: policy content analysis

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    A revision of the pharmaceutical legislation is ongoing at the European Level. The European Commission proposed a first draft in April 2023, and the European Parliament has adopted a position on the proposal in April 2024. The proposal consists of a new Directive and a new Regulation, with the aim of integrating different provisions that have been introduced over time. The proposal aims at encouraging the industry in conducting research and developing technologies that reach patients, while addressing market failures. We discuss both general and targeted incentives that are proposed, as well as the provisions to foster access to medicines for all patients in the European Union. Although the legislative process has not been completed yet, an analysis of the texts that have been debated in the early stages, vis-à-vis the legislation in force, can inform on the most relevant and debated issues and on the aspects the reform is most likely to affect

    One Form to Rule Them All: Towards a Personalized, But Standardized, European Data Altruism Consent Form

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    Data altruism is a novel concept established by the Data Governance Act that aims to increase the availability of data for purposes that meet the general interests of society. However, realizing this future relies on the data subjects giving their consent to use the data collected. As of this time, little is known about how a European data altruism consent form might allow a transparent, user-friendly, and lawful process for granting and withdrawing consent to the re-using one’s personal information. This article therefore explores some of the most pressing legal, design, and technical challenges that need to be addressed to enable a trustworthy exchange of data and consent permissions. Given that decisions about whether one’s data can be used mostly depend on personal and contextual factors, I argue for the implementation of dynamic consent with standardized, interoperable semantic specifications used as viable means to personalizing consent. This would be the most lawful and efficient way to support individual autonomy

    Targeting the gut to improve seizure control in CDKL5 deficiency disorder (CDD): study protocol for a single-arm, open-label clinical trial

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    Introduction: Cyclin-dependent kinase-like 5 deficiency disorder (CDD) is a neurodevelopmental condition characterized by infantile-onset epilepsy, developmental delay, intellectual and motor disabilities, sleep disturbances, and cortical visual impairment. Currently, there is no treatment for CDD, and epilepsy is a prominent and severe feature of the disorder. Standard anti-seizure medications have limited efficacy in seizure control, leading to detrimental effects on cognitive and motor development in CDD. The gut-brain axis has gained attention in epilepsy research, prompted by evidence of gastrointestinal (GI) symptoms in people with epilepsy. Notably, CDD patients experience GI problems and exhibit alterations in their gut microbiota compared to healthy individuals. We propose targeting the gut-microbiota-brain axis in CDD patients to alleviate seizures and potentially ameliorate other symptoms. Methods and analysis: The protocol involves a two-step treatment strategy: a 12-week supplementation with alpha-lactalbumin (ALAC), fructooligosaccharides (FOS), and inulin to reduce inflammation, followed by a 12-week supplementation with ALAC/FOS/Inulin plus Sodium butyrate (NaB), to restore the balance of the gut microbiota. Clinical parameters, including seizure frequency, sleep disturbances, and GI discomfort, will be evaluated. Stool samples will be collected to analyse the gut microbiome. Primary objectives are to determine whether supplementation with ALAC/FOS/inulin alone or in combination with NaB can improve neurological features in CDD and to explore their effects on gut microbiota composition. Our study aims to provide insights into the potential benefits of targeting the gut-brain axis in CDD and offer new therapeutic options to improve seizure control and associated comorbidities. Ethics and dissemination: The study protocol was approved by the local ethics committee (CET 3, n° 4189_17.04.2024_N_bis). Study results will be disseminated by the investigators through presentations at international scientific conferences and reported in peer-reviewed scientific journals. Clinical trial registration: ClinicalTrials.gov, Identifier NCT06448663

    Rainfall patterns during barley seed development underlie genomic variation for germination after flooding

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    The diversity of plant genetic resources is the result of complex evolutionary processes, including adaptation to environmental stresses. High precipitation levels during the growing season may result in soil flooding events that place major constraints on crop productivity. Barley (Hordeum vulgare) is one of the most important cereals worldwide and serves as a model for studying the molecular responses of plants to climate change, due to its wide adaptability and diffusion to different environments. We explored the genetic associations of a global collection of barley landraces and wild relatives with rainfall regimes recorded in their growing areas. We found that the rainfall patterns observed during the driest months of the year and corresponding to the seed development period correlated significantly with the subsequent capacity of barley accessions to germinate after flooding. We then conducted an environmental genome-wide association study (eGWAS) and analyzed exome sequencing data, which revealed a narrow region on barley chromosome 1 with a possible influence on barley response to rainfall patterns. Using molecular approaches, we identified gene candidates involved in seed morphology and dormancy that are crucial for barley germination in soil after a flooding event in a natural environment

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