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Guided by the Theory of Racial Socialization in Action (TRSA; Smith-Bynum in press), this study examined observed caregiver-provided ethnic-racial socialization in response to a school-based discriminatory dilemma. Forty-five Black and 36 Latinx caregivers (88% mothers) with low-income and their children (M

Disease-causing variants in STXBP1 are among the most common genetic causes of neurodevelopmental disorders. However, the phenotypic spectrum in STXBP1-related disorders is wide and clear correlations between variant type and clinical features have not been observed so far. Here, we harmonized clinical data across 534 individuals with STXBP1-related disorders and analysed 19 973 derived phenotypic terms, including phenotypes of 253 individuals previously unreported in the scientific literature. The overall phenotypic landscape in STXBP1-related disorders is characterized by neurodevelopmental abnormalities in 95% and seizures in 89% of individuals, including focal-onset seizures as the most common seizure type (47%). More than 88% of individuals with STXBP1-related disorders have seizure onset in the first year of life, including neonatal seizure onset in 47%. Individuals with protein-truncating variants and deletions in STXBP1 (n = 261) were almost twice as likely to present with West syndrome and were more phenotypically similar than expected by chance. Five genetic hotspots with recurrent variants were identified in more than 10 individuals, including p.Arg406Cys/His (n = 40), p.Arg292Cys/His/Leu/Pro (n = 30), p.Arg551Cys/Gly/His/Leu (n = 24), p.Pro139Leu (n = 12), and p.Arg190Trp (n = 11). None of the recurrent variants were significantly associated with distinct electroclinical syndromes, single phenotypic features, or showed overall clinical similarity, indicating that the baseline variability in STXBP1-related disorders is too high for discrete phenotypic subgroups to emerge. We then reconstructed the seizure history in 62 individuals with STXBP1-related disorders in detail, retrospectively assigning seizure type and seizure frequency monthly across 4433 time intervals, and retrieved 251 anti-seizure medication prescriptions from the electronic medical records. We demonstrate a dynamic pattern of seizure control and complex interplay with response to specific medications particularly in the first year of life when seizures in STXBP1-related disorders are the most prominent. Adrenocorticotropic hormone and phenobarbital were more likely to initially reduce seizure frequency in infantile spasms and focal seizures compared to other treatment options, while the ketogenic diet was most effective in maintaining seizure freedom. In summary, we demonstrate how the multidimensional spectrum of phenotypic features in STXBP1-related disorders can be assessed using a computational phenotype framework to facilitate the development of future precision-medicine approaches.

This measurement validity study assesses the Hughes and Chen (1997) Multidimensional Scale of Race Socialization in an early childhood sample to examine when ethnic-racial socialization (ERS) strategies emerge and the degree to which they are employed with young children.We administered the Multidimensional Scale among a sample of 407 African American and Latinx families. Data were collected across four waves (child ages 2.5-7.5 years). Longitudinal, multigroup confirmatory factor analyses were modeled to test (a) factorial validity of the extant measure in a novel group, (b) equivalence of measuring ERS across age, gender, and ethnicity, and (c) latent means across the sample.The two-factor model was validated in this early childhood sample and measured invariantly across all waves and groups. Latent means of cultural socialization and preparation for bias steadily increased across early childhood with noteworthy differences in effect sizes (.58-.75, respectively) between the second and third assessments when the majority of children entered kindergarten. Latent means did not differ for caregivers on account of child gender. African American caregivers reported greater messaging of cultural socialization (ES range: .44-1.55) than Latinx caregivers, and also reported greater preparation for bias than their Latinx peers but only at school entry (ES = .66).This study provides evidence that ERS strategies commonly used with older children emerge very early on in family experiences and supports the notion that the transition to kindergarten marks a notable ecological shift for ethnic minority children. (PsycInfo Database Record (c) 2022 APA, all rights reserved).

Purpose: This longitudinal study assessed continuity and stability of productive language (vocabulary and grammar) and discourse features (turn-taking; asking and responding to questions) during mother–child play. Method: Parent–child language use in 119 Spanish-speaking, Mexican immigrant mothers and their children at two ages ( M = 2.5 and 3.6 years) was evaluated from transcriptions of interactions. Results: Child productive language significantly increased over the year, whereas mothers showed commensurate increases in vocabulary diversity but very little change in grammatical complexity. Mother–child discourse was characterized by discontinuity: Mothers decreased their turn length and asked fewer questions while children increased on both measures. Rates of responding to questions remained high for both mothers and children even as children increased and mothers decreased over time. Mothers and children showed significant rank-order stability in productive language and measures of discourse. Mothers' rate of asking questions and children's responses to questions during the first interaction predicted children's receptive vocabulary a year later. Conclusions: As children become more sophisticated communicators, language input remains important, with discourse features growing in relevance. Children's early opportunities to respond to parents' questions in the context of play benefit their language skills. This work extends the evidence base from monolingual English-speaking families and is interpreted in the context of prior research on parenting practices in U.S. families of Mexican origin.

Despite strong evidence self-regulation skills are critical for school readiness, there remains a dearth of longitudinal studies that describe developmental trajectories of self-regulation, particularly among low-resource and underrepresented populations such as Spanish-English dual-language learners (DLLs). The present study examined individual differences in trajectories of self-regulation among 459 Spanish-English DLLs who were Hispanic from four different samples and three geographic locations in the U.S. Self-regulation was assessed in all samples using repeated administration of the Head-Toes-Knees-Shoulders (HTKS) task from early childhood through early elementary school. Results of latent growth curve analyses revealed that growth was best represented by quadratic trajectories. Latent class growth analyses captured significant individual differences in self-regulation trajectories. One group of children (41%) started with higher HTKS scores and displayed rapid early growth in performance. A similar percentage of children (41%) displayed intermediate growth in self-regulation, starting with lower HTKS scores but displaying rapid growth commencing arrange 4.5 years. Finally, about 18% of the sample did not display growth in HTKS performance until after entry to elementary school, around age 6 years. Girls were half as likely as boys to be in this later developing group. Likewise, children from families at the upper end of the socioeconomic distribution in this low-income sample were significantly less likely to be in the later developing group relative to children from families with lower SES. Study findings indicate the importance of monitoring growth rates in self-regulation as a means of identifying children at risk for entering school without the requisite self-regulation skills.

This paper explores the complex iteration of ethnic identity and legal culture amongst the Chakma peoples of the Chittagong Hill Tracts of Bangladesh and the hill territories of Tripura, India. Its hypothesis is that the stigma of tribal identity is more likely to be sustained in situations of ‘weak’ pluralism – that is, where the customary system is formally annexed to the state. However, such stigma is more likely to be dispelled where numerous, competing legal jurisdictions collide in a ‘strong’ pluralism expressed as a relatively autonomous legal domain, overlapping legal jurisdictions and in the presence of a productive and potentially creative ‘interlegality’. Conversely, strong state recognition of identities, such as can be found in India, appears to be linked to weak local pluralism, creating an insular and inward-looking community that embraces stigma and the preservation and use of customary practices. In conclusion, this paper asserts that formal state recognition in a situation of legal pluralism tends to freeze identities in a facsimile of the colonial trope of tribe, whilst conflict between the communities and the state generates new and resistant identities and new iterations of customary law.

1. The Environmental Data Initiative (EDI) is a trustworthy, stable data repository and data management support organization for the environmental scientist. In a bottom-up community process EDI was built with the premise that freely and easily available data are necessary to advance the understanding of complex environmental processes and change, to improve transparency of research results, and to democratize ecological research. 2. EDI provides tools and support that allow the environmental researcher to easily integrate data publishing into the research workflow. 3. Almost ten years since going into production, we analyze metadata to provide a general description of EDI’s collection of data and its data management philosophy and placement in the repository landscape. We discuss how comprehensive metadata and the repository infrastructure lead to highly findable, accessible, interoperable, and reusable (FAIR) data by evaluating compliance with specific community proposed FAIR criteria. 4. Finally, we review measures and patterns of data (re)use, assuring that EDI is fulfilling its stated premise.

The political rights of public employees vary greatly in scope and depth across democratic societies. While some countries balance the need for a neutral government with the rights of its employees, others fail to provide meaningful avenues for expression of political activities. As the civil service has grown and become more vocal, the government’s desire for an impartial government has grown with it. Canada, Australia, and the United Kingdom, three Westminster-style governments who evolved from a once singular legal system, have adopted laws and regulations to address their employees’ political activities with varying effectiveness and form. This Article will analyze each country’s legal framework for these restrictions, within their larger free speech regime. In particular, this Article will use candidacy and social media activity as a lens to examine these restrictions and provide examples for how these restrictions most commonly effect civil servants’ political activities. Although each regime has successes and failures at balancing the government’s need for impartiality with the civil service’s rights to expression, Canada has most successfully established a balance between the government’s interests in neutrality with their employee’s rights to political expression.

Purpose Pathogenic variants in SCN2A cause a wide range of neurodevelopmental phenotypes. Reports of genotype–phenotype correlations are often anecdotal, and the available phenotypic data have not been systematically analyzed. Methods We extracted phenotypic information from primary descriptions of SCN2A-related disorders in the literature between 2001 and 2019, which we coded in Human Phenotype Ontology (HPO) terms. With higher-level phenotype terms inferred by the HPO structure, we assessed the frequencies of clinical features and investigated the association of these features with variant classes and locations within the NaV1.2 protein. Results We identified 413 unrelated individuals and derived a total of 10,860 HPO terms with 562 unique terms. Protein-truncating variants were associated with autism and behavioral abnormalities. Missense variants were associated with neonatal onset, epileptic spasms, and seizures, regardless of type. Phenotypic similarity was identified in 8/62 recurrent SCN2A variants. Three independent principal components accounted for 33% of the phenotypic variance, allowing for separation of gain-of-function versus loss-of-function variants with good performance. Conclusion Our work shows that translating clinical features into a computable format using a standardized language allows for quantitative phenotype analysis, mapping the phenotypic landscape of SCN2A-related disorders in unprecedented detail and revealing genotype–phenotype correlations along a multidimensional spectrum.

This article aims to explore the role of eligibility for parental leave as a determinant of access and as an enabler of leave take-up. To analyse the link between eligibility and take-up, we study a unique policy change in Luxembourg’s parental leave scheme. The country’s 2016 parental leave reform relaxed the eligibility criteria to enable marginal part-time working parents to access the parental leave scheme for the first time. We focus on this change and examine to what extent relaxing the eligibility criteria translated into increased take-up by the marginal part-time working parents who became eligible. To quantify this transition, we analyse trends in and patterns of eligibility for the scheme in Luxembourg between 2009 and 2018 among first-time parents working full-time, part-time, or marginal part-time hours. We use a subsample of Luxembourg-resident, cohabiting, first-time parents (N = 6,254) drawn from the social security data. Our analysis shows that as eligibility is dependent on individual factors, it has similarities among mothers and fathers, whereas take-up is notably greater for mothers. After the reform, we observe that marginal part-time working mothers started taking parental leave, but up to 2018, the reform’s outreach to marginal part-time working fathers remained limited. We also find that foreign national parents are less likely to be eligible for parental leave and have lower take-up rates. Despite the gendered parental leave take-up behaviours in parallel with international evidence, marginal part-time working mothers’ positive response to the reform indicates progress towards strengthening women’s labour market attachment in Luxembourg.

Background Growing evidence on the inter-related health trajectories of mothers and their children is supported by linked, routinely collected, administrative data held by the UK National Health Service and government departments. A similar evidence base for fathers is hindered by the scarcity of necessary information held in maternity or birth records in England. We conducted a scoping review to develop a conceptual model of dimensions of fatherhood, identify and categorise the methods used for linking fathers with their children in administrative data for public health research, and map these methods onto the dimensions of fatherhood. Methods We developed a framework of social fathering by integrating the key components from relevant theoretical models and empirical studies. We searched PubMed, Scopus, and Google Scholar for articles published between Jan 1, 2000, and Dec 31, 2020, from countries belonging to the Organisation for Economic Co-operation and Development that link fathers' and children's records in administrative data. Search terms included: “father” and “administrative data” or “record linkage”. Studies were excluded if child outcomes were measured after the age of 18 years. Findings We identified 77 studies that quantified the association between paternal exposures and child health and development outcomes, using linked administrative data on fathers and their children. Four methods have been used globally to link fathers and children across vital statistics, health, social care, education, and justice records. These methods are based on personal identity numbers (PINs) for national identification, address or household identifiers, information found on birth registrations, or health claims. Interpretation To our knowledge, this review is the first to identify linkage methods used for father-child pairs using routinely collected records and to present the range of paternal exposures and child outcomes studied using administrative data. We mapped what we can learn from these linkages to the dimensions of fatherhood. However, significant assumptions are made when using linkage methods as proxies for paternal involvement. Currently, there is no way to link fathers and children's health data at the population level in England and, therefore, changes in practice are required to facilitate father-child linkage. To advance fatherhood research for child and family public health, we recommend routinely recording paternal National Health Service numbers as part of hospital birth notifications. Funding UCL Grand Challenges and the Medical Research Council.

The Environmental Data Initiative (EDI) and the National Ecological Observatory Network (NEON) have been developing a flexible intermediate data design pattern for ecological community data called “ecocomDP”, which is intended to promote FAIR data principles. Specifically, this effort will enhance the discoverability of and access to biodiversity data from NEON and EDI data holdings, including data from the United States Long Term Ecological Research (USLTER) program (O'Brien et al. 2021). The ecocomDP data model is applied in the ecocomDP R (programming language) library, which provides tools for independent researchers to format their data following the ecocomDP standard, as well as tools to search and visualize data from NEON and EDI data holdings in their R environment. The flexibility of the ecocomDP data model allows for much of the ancillary data associated with observation events to be preserved. Here we describe a modular workflow that is under development to expose ecocomDP-formatted data packages in the Global Biodiversity Information Facility (GBIF) data portal (Fig. 1). Specifically, we highlight an effort to apply this workflow to create a pipeline to convert and submit NEON biodiversity data products to GBIF. EDI now has more than 70 data packages reformatted to the ecocomDP model, and has nearly finished developing a conversion of that intermediate format to a Darwin Core Archive (DwC-A, event core) format (Wieczorek et al. 2012) for submission to GBIF. This workflow takes advantage of EDI’s dataset subscription service, which triggers creation of an updated DwC-A when an original dataset is revised. Because ecocomDP provides a standardized input to this submission process, any data package in the ecocomDP format can be exposed in GBIF through this workflow. Thus, we are working to leverage the EDI-managed conversion and submission process to expose NEON data in GBIF, which is possible because of the existing mappings of NEON data products to ecocomDP (Li et al. 2022). This will include data products representing terrestrial and aquatic organisms (Table 1) from all NEON sites, spanning the entire United States. The overall goal of this effort is to provide an automated, modular workflow with complete provenance to submit NEON and EDI datasets to GBIF, built in such a way that datasets can be properly updated as new samples are collected and the data are published. The development of such a submission pipeline will provide a standardized process to expose biodiversity data from two continental scale networks, NEON and the U.S. National Science Foundation's Long-term Ecological Research network in GBIF. Further, the modularity of the workflow will allow independent researchers to adapt tools developed in this effort for their data archiving and publishing needs.

We hypothesized that the goodness-of-fit between profiles of observed, caregiver-provided ethnic-racial socialization (ERS), and child self-regulation (i.e., inhibitory control) would differentially associate with child behavioral outcomes. Conversations between 80 caregivers (45% Latinx; 55% Black) and their children (M

This report is dedicated to the indigenous ethnic minority community of Travellers in Ireland, especially those who gave so generously of their time in recounting their experiences to us.

This article examines the role of one of the first arthouse cinemas in London, the Everyman in Hampstead. A detailed local study, it also explores the wider context of cinema in Britain in the 1930...

Background Most acute decompensated heart failure admissions are driven by congestion. However, residual congestion is common and often driven by the lack of reliable tools to titrate diuretic therapy. The authors previously developed a natriuretic response prediction equation (NRPE), which predicts sodium output using a spot urine sample collected 2 h after loop diuretic administration. Objectives The purpose of this study was to validate the NRPE and describe proof-of-concept that the NRPE can be used to guide diuretic therapy. Methods Two cohorts were assembled: 1) the Diagnosing and Targeting Mechanisms of Diuretic Resistance (MDR) cohort was used to validate the NRPE to predict 6-h sodium output after a loop diuretic, which was defined as poor ( 150 mmol); and 2) the Yale Diuretic Pathway (YDP) cohort, which used the NRPE to guide loop diuretic titration via a nurse-driven automated protocol. Results Evaluating 638 loop diuretic administrations, the NRPE showed excellent discrimination with areas under the curve ≥0.90 to predict poor, suboptimal, and excellent natriuretic response, and outperformed clinically obtained net fluid loss (p Conclusions Natriuretic response can be rapidly and accurately predicted by the NRPE, and this information can be used to guide diuretic therapy during acute decompensated heart failure. Additional study of diuresis guided by the NRPE is warranted.

BACKGROUND The Health Resources and Services Administration's Ryan White HIV/AIDS Program provides services to more than half of all people diagnosed with HIV in the United States. We present and validate a mathematical model that can be used to estimate the long-term public health and cost impact of the federal program. METHODS We developed a stochastic, agent-based model that reflects the current HIV epidemic in the United States. The model simulates everyone's progression along the HIV care continuum, using 2 network-based mechanisms for HIV transmission: injection drug use and sexual contact. To test the validity of the model, we calculated HIV incidence, mortality, life expectancy, and lifetime care costs and compared the results with external benchmarks. RESULTS The estimated HIV incidence rate for men who have sex with men (502 per 100,000 person years), mortality rate of all people diagnosed with HIV (1663 per 100,000 person years), average life expectancy for individuals with low CD4 counts not on antiretroviral therapy (1.52-3.78 years), and lifetime costs ($362,385) all met our validity criterion of within 15% of external benchmarks. CONCLUSIONS The model represents a complex HIV care delivery system rather than a single intervention, which required developing solutions to several challenges, such as calculating need for and receipt of multiple services and estimating their impact on care retention and viral suppression. Our strategies to address these methodological challenges produced a valid model for assessing the cost-effectiveness of the Ryan White HIV/AIDS Program.

Purpose Childhood epilepsies have a strong genetic contribution, but the disease trajectory for many genetic etiologies remains unknown. Electronic medical record (EMR) data potentially allow for the analysis of longitudinal clinical information but this has not yet been explored. Methods We analyzed provider-entered neurological diagnoses made at 62,104 patient encounters from 658 individuals with known or presumed genetic epilepsies. To harmonize clinical terminology, we mapped clinical descriptors to Human Phenotype Ontology (HPO) terms and inferred higher-level phenotypic concepts. We then binned the resulting 286,085 HPO terms to 100 3-month time intervals and assessed gene–phenotype associations at each interval. Results We analyzed a median follow-up of 6.9 years per patient and a cumulative 3251 patient years. Correcting for multiple testing, we identified significant associations between “Status epilepticus” with SCN1A at 1.0 years, “Severe intellectual disability” with PURA at 9.75 years, and “Infantile spasms” and “Epileptic spasms” with STXBP1 at 0.5 years. The identified associations reflect known clinical features of these conditions, and manual chart review excluded provider bias. Conclusion Some aspects of the longitudinal disease histories can be reconstructed through EMR data and reveal significant gene–phenotype associations, even within closely related conditions. Gene-specific EMR footprints may enable outcome studies and clinical decision support.

International audience; Socioeconomic indicators are essential to help design and monitor the impact of public policies on society. Such indicators are usually obtained through census data collected at 10-year intervals, which are not only temporally coarse but expensive. Over recent years other ways of collecting data and producing these indicators have been explored, in particular using the new surveillance capabilities that remote observations can provide. The objective of this paper is to evaluate the assessment of socioeconomic indicators using street-view imagery, through a case study conducted in a region of Brazil, the Vale do Ribeira, one of the poorest semi-rural regions in Brazil. In this study we used socioeconomic indicators collected by the Brazilian Institute of Geography and Statistics (IBGE) and used Google Street View (GSV) images as our source of remote observations. A pre-trained convolutional neural network (CNN) was used to predict socio-economic indicators from GSV. To evaluate the performance of the classifier, we performed five-fold cross-validation between the predicted indicator and its true value. The best performance was obtained for the highest income class, with 80% of correct prediction. We conclude that the method has the potential to predict socioeconomic indicators across a large area with social challenges such as Vale do Ribeira, and that the network model is general enough to be used even when the imagery dataset is from semi-rural areas. This demonstrates the applicability of GSV datasets for similar settings and perhaps ensuring their replicability, which is a scientific requirement that requires further experimentation/evaluation.

Background Benzathine penicillin G (BPG) is the cornerstone of secondary prophylaxis to prevent Streptococcus pyogenes infections, which precede acute rheumatic fever (ARF). The paucity of pharmacokinetic (PK) data from children and adolescents from populations at the highest risk of ARF and rheumatic heart disease (RHD) poses a challenge for determining the optimal dosing and frequency of injections and undermines efforts to develop improved regimens. Methods We conducted a 6 month longitudinal PK study of young people receiving BPG for secondary prophylaxis. Throat and skin swabs were collected for microbiological culture along with dried blood spot (DBS) samples for penicillin concentrations. DBSs were assayed using LC-MS/MS. Penicillin concentration datasets were analysed using non-linear mixed-effects modelling and simulations performed using published BMI-for-age and weight-for-age data. Results Nineteen participants provided 75 throat swabs, 3 skin swabs and 216 penicillin samples. Throat cultures grew group C and G Streptococcus. Despite no participant maintaining penicillin concentration >20 ng/mL between doses, there were no S. pyogenes throat infections and no ARF. The median (range) observed durations >20 ng/mL for the low- and high-BMI groups were 14.5 (11.0–24.25) and 15.0 (7.5–18.25) days, respectively. Conclusions Few patients at highest risk of ARF/RHD receiving BPG for secondary prophylaxis maintain penicillin concentrations above the target of 20 ng/mL beyond 2 weeks during each monthly dosing interval. These PK data suggest that some high-risk individuals may get inadequate protection from every 4 week dosing. Future research should explore this gap in knowledge and PK differences between different populations to inform future dosing schedules.

Research has shown that paternal involvement positively impacts on child health and development. We aimed to develop a conceptual model of dimensions of fatherhood, identify and categorise methods used for linking fathers with their children in administrative data, and map these methods onto the dimensions of fatherhood. We carried out a systematic scoping review to create a conceptual framework of paternal involvement and identify studies exploring the impact of paternal exposures on child health and development outcomes using administrative data. We identified four methods that have been used globally to link fathers and children in administrative data based on family or household identifiers using address data, identifiable information about the father on the child's birth registration, health claims data, and Personal Identification Numbers. We did not identify direct measures of paternal involvement but mapping linkage methods to the framework highlighted possible proxies. The addition of paternal National Health Service numbers to birth notifications presents a way forward in the advancement of fatherhood research using administrative data sources.

The introduction of lockdown due to a public health emergency in March 2020 marked the beginning of substantial changes to daily life for all families with young children. Here we report the experience of families from London Borough of Tower Hamlets with high rates of poverty and ethnic and linguistic diversity. This inner city community, like communities worldwide, has experienced a reduction or closure in access to education, support services, and in some cases, a change in or loss of income, job, and food security. Using quantitative survey items (N = 992), we examined what differences in family circumstances, for mothers and fathers of young children aged 0–5 living in Tower Hamlets, during March 2020 to November 2020, were associated with their mental health status. We measure parental mental health using symptoms of depression (self-report: Patient Health Questionnaire depression scale: PHQ-8), symptoms of anxiety levels (self-report: General Anxiety Disorder: GAD-7), and perceptions of direct loneliness. We find parental mental health difficulties are associated with low material assets (financial security, food security, and children having access to outside space), familial assets (parents time for themselves and parent status: lone vs. cohabiting), and community assets (receiving support from friends and family outside the household). South Asian parents and fathers across ethnicities were significantly more likely to experience mental health difficulties, once all other predictors were accounted for. These contributing factors should be considered for future pandemics, where restrictions on people's lives are put in place, and speak to the importance of reducing financial insecurity and food insecurity as a means of improving the mental health of parents.

In fall 2017, Water@UW-Madison hosted its second annual poster session. The event was designed to spread knowledge of the organization on campus while advancing its mission of building connections between members of the UW-Madison Water Community. The event was held on the evening of October 24th at the Wisconsin Institutes for Discovery with snacks, beverages, beer, and wine catered by Steenbock���s on Orchard. 34 different posters featuring water research from 10 different campus departments, as well as organization partners such as the Wisconsin Department of Natural Resources, UW Extension, and National Science Foundation, were presented in an informal walk-in gallery setting. Numerous productive conversations between presenters and attendees actively participated in the future of Water@UW-Madison by submitting information about their water research to a geodatabase, which will be used in producing a story map of water research at UW-Madison. Submissions to this database were displayed in real time on an interactive map that allowed other attendees to explore details of each project. Total attendance at the event was estimated around 230 people including presenters, guests, volunteers, and Water@UW staff., Funding: NSF DBI-1629233, NSF DBI-1565103, DBI-1931143, and NSF DBI-1931174

Objective: This paper reports first results from a survey of 992 parents and parents to be living in an ethnically diverse and socio-economically unequal borough of East London during the coronavirus pandemic that reduced mobility, closed services and threatened public health. Background: Little is known about the place based impacts of the pandemic on families with young children. We describe the living circumstances of families with children under five or expecting a baby living in Tower Hamlets during the Coronavirus pandemic in 2020, and then examine the relative importance of household characteristics such as ethnicity and household income for adverse impacts on survey respondents, as seen in mental health outcomes. Method: a community survey sample recruited with support from the local council comprised 75% mothers/pregnant women, 25% fathers/partners of pregnant women. Reflecting the borough population, 35 percent were White British or Irish and 36 percent were Bangladeshi, and the remainder were from a wide range of ethnic backgrounds. Adopting an assets based approach, we describe material, familial and community assets using three household income bands and seven ethnic groups. We then use regressions to identify which assets were most important in mitigating adversity. Results: We find that material assets (income, employment, food insecurity, housing quality) were often insecure and in decline but familial assets (home caring practices, couple relationships) were largely sustained. Community assets (informal support, service provision) were less available or means of access had changed. Our analyses find that while descriptively ethnicity structured adverse impacts of the pandemic related changes to family life, income and couple relationships were the most important assets for mitigating adversity as seen in mental health status. Conclusion: Supporting family assets will require close attention to generating local and decent work as well as enhancing access to community assets.

There are various types of family leave available to fathers across and within countries. The specific design features of family leave policies are associated with how well used they are by fathers, and the key features associated with higher take up by fathers are presented here. There is an emerging literature on the various impacts of fathers on leave in relation to factors such as family health and well-being and gender equality in the labour market. In particular, fathers and family leave are important for a good quality of infant life. Finally, the chapter considers ways in which employers can support fathers in the workplace to take leave, in light of the range of associated benefits.

ISSUE ADDRESSED Aboriginal and Torres Strait Islander peoples in Australia have an inequitable burden of acute rheumatic fever (ARF) and rheumatic heart disease (RHD), concentrated among young people and necessitating ongoing medical care during adolescence. There is an unmet need for improved well-being and support for these young people to complement current biomedical management. METHODS This pilot program initiative aimed to determine the suitability and appropriate format of an ongoing peer support program to address the needs of young people living with RHD in urban Darwin. RESULTS Five participants took part in three sessions. Findings demonstrated the peer-support setting was conducive to offering support and enabled participants to share their experiences of living with RHD with facilitators and each other. Satisfaction rates for each session, including both educational components and support activities, were high. CONCLUSIONS Learnings from the pilot program can inform the following elements of an ongoing peer-support program: characteristics of co-facilitators and external presenters; program format and session outlines; possible session locations; and resourcing. SO WHAT?: Peer support programs for chronic conditions have demonstrated a wide range of benefits including high levels of satisfaction by participants, improved social and emotional well-being and reductions in patient care time required by health professionals. This pilot program demonstrates the same benefits could result for young people living with RHD.

Lauded by the World Bank for its “strong and stable growth” Botswana has, ostensibly, beaten an enviable path from Africa’s poorest nation at independence in 1966 to a poster-child for neo-liberal ...

We are now facing profound changes (biodiversity, climate, pandemic, etc.). Human impacts and their mitigation will depend on our ability to mobilize research at the global level. The sustainable development of the society will largely depend on the sustainable development of global science and scientific research tools, outputs, and research ecosystems. This globalization of research requires interoperating our observation and experimentation systems in order to better understand these changes, to better simulate their effects. The Covid-19 pandemic is now raging around the world. The reproducibility of research and results across regions in different contexts should accelerate human responses. Data sharing and the development of Synthesis Research with data aggregation at large scale is critical to enable such processes. The use of common knowledge, vocabularies, standards and procedures at a large scale is necessary. The objective of this poster is to report on the challenges met while building data dictionaries in three global projects related to biodiversity and/or disease research: PARSEC, Kakila, ERINHA-Advance. The Kakila database centralizes and harmonizes marine mammal observation data for the AGOA sanctuary around the French archipelago of Guadeloupe, French Antilles. The PARSEC Project is building new tools for data sharing and reuse through a transnational investigation of the socioeconomic impact of protected areas. The ERINHA-Advance project aims to support the operations of the ERINHA research infrastructure which is designed to generate data from transnational access research activities on highly pathogenic agents. In these 3 global case-studies, similar challenges have arisen: to aggregate and interoperate pre-existing heterogeneous data at the global scale, and to share common tools to monitor, maintain quality, scan scale and cope with uncertainty. This poster proposes a draft common methodology, a data dictionary cookbook, which will provide a roadmap towards the building of large scale - data dictionaries. Topics proposed to be covered in such a cookbook include: how to search for existing and appropriate data dictionaries, controlled vocabularies or other semantic resources (before building a new one), the first steps for data dictionary building, data dictionary literacy (and why it is a mandatory work), how to define all scientific objects, aspects (or use existing one) and agree on the definitions with the whole community, building / proposing variables / indicators with ontology models, schemas, variables naming rules and context awareness, and finally addressing dimension issues considering each context. The common experience of our three projects showed that we need to proceed step by step as simply as possible and to ensure that each step is understandable for the whole community. It is necessary to improve access and re-use of all existing semantic materials and not trying to build a cathedral with a little spoon.

While genetic studies of epilepsies can be performed in thousands of individuals, phenotyping remains a manual, non-scalable task. A particular challenge is capturing the evolution of complex phenotypes with age. Here, we present a novel approach, applying phenotypic similarity analysis to a total of 3251 patient-years of longitudinal electronic medical record data from a previously reported cohort of 658 individuals with genetic epilepsies. After mapping clinical data to the Human Phenotype Ontology, we determined the phenotypic similarity of individuals sharing each genetic etiology within each 3-month age interval from birth up to a maximum age of 25 years. 140 of 600 (23%) of all 27 genes and 3-month age intervals with sufficient data for calculation of phenotypic similarity were significantly higher than expect by chance. 11 of 27 genetic etiologies had significant overall phenotypic similarity trajectories. These do not simply reflect strong statistical associations with single phenotypic features but appear to emerge from complex clinical constellations of features that may not be strongly associated individually. As an attempt to reconstruct the cognitive framework of syndrome recognition in clinical practice, longitudinal phenotypic similarity analysis extends the traditional phenotyping approach by utilizing data from electronic medical records at a scale that is far beyond the capabilities of manual phenotyping. Delineation of how the phenotypic homogeneity of genetic epilepsies varies with age could improve the phenotypic classification of these disorders, the accuracy of prognostic counseling, and by providing historical control data, the design and interpretation of precision clinical trials in rare diseases.

Emotional well-being depends on the ability to successfully engage a variety of coping strategies to regulate affective responses. Most studies have investigated the effectiveness of emotion regulation (ER) strategies that are deployed relatively later in the timing of processing that leads to full emotional experiences (i.e. reappraisal and suppression). Strategies engaged in earlier stages of emotion processing, such as those involved in attentional deployment, have also been investigated, but relatively less is known about their mechanisms. Here, we investigate the effectiveness of self-guided focused attention (FA) in reducing the impact of unpleasant pictures on the experienced negative affect. Participants viewed a series of composite images with distinguishable foreground (FG, either negative or neutral) and background (BG, always neutral) areas and were asked to focus on the FG or BG content. Eye-tracking data were recorded while performing the FA task, along with participants' ratings of their experienced emotional response following the presentation of each image. First, proving the effectiveness of self-guided FA in down-regulating negative affect, focusing away from the emotional content of pictures (BG focus) was associated with lower emotional ratings. Second, trial-based eye-tracking data corroborated these results, showing that spending less time gazing within the negative FG predicted reductions in emotional ratings. Third, this reduction was largest among subjects who habitually use suppression to regulate their emotions. Overall, the present findings expand the evidence regarding the FA's effectiveness in controlling the impact of emotional stimuli and inform the development of training interventions emphasizing attentional control to improve emotional well-being. (PsycInfo Database Record (c) 2020 APA, all rights reserved).

A conditional right to request flexible working arrangements (FWAs) has existed for most UK employee parents since 2003. However, there are growing concerns about access, particularly among fathers. Using nationally representative data from the 2015 UK Household Longitudinal Survey, this article examines fathers’ perceptions of the availability of hours reduction, schedule flexibility and working from home. Results show that almost one-third of fathers believe that FWAs that reduce working hours are unavailable to them, compared with one-tenth of mothers. There are no gender differences in perceptions of availability of schedule and location flexibility. Among fathers, those with lower education levels, in lower status occupations, working in the private sector and in workplaces that do not have trade union presence are more likely to believe that FWAs are unavailable. Therefore, even though most employees now have the right to request FWAs, a significant minority of fathers do not perceive FWAs to be available to them.

Research data are a vital component of the scientific record. Discovering and assessing data for possible reuse in future research is challenging. The Belmont Forum has recently awarded funds to th...

Background With an annual budget of more than $2 billion, the Health Resources and Services Administration's Ryan White HIV/AIDS Program (RWHAP) is the third largest source of public funding for HIV care and treatment in the United States, yet little analysis has been done to quantify the long-term public health and economic impacts of the federal program. Methods Using an agent-based, stochastic model, we estimated health care costs and outcomes over a 50-year period in the presence of the RWHAP relative to those expected to prevail if the comprehensive and integrated system of medical and support services funded by the RWHAP were not available. We made a conservative assumption that, in the absence of the RWHAP, only uninsured clients would lose access to these medical and support services. Results The model predicts that the proportion of people with HIV who are virally suppressed would be 25.2 percentage points higher in the presence of the RWHAP (82.6 percent versus 57.4 percent without the RWHAP). The number of new HIV infections would be 18 percent (190,197) lower, the number of deaths among people with HIV would be 31 percent (267,886) lower, the number of quality-adjusted life years would be 2.7 percent (5.6 million) higher, and the cumulative health care costs would be 25 percent ($165 billion) higher in the presence of the RWHAP relative to the counterfactual. Based on these results, the RWHAP has an incremental cost-effectiveness ratio of $29,573 per quality-adjusted life year gained compared with the non-RWHAP scenario. Sensitivity analysis indicates that the probability of transmitting HIV via male-to-male sexual contact and the cost of antiretroviral medications have the largest effect on the cost-effectiveness of the program. Conclusions The RWHAP would be considered very cost-effective when using standard guidelines of less than the per capita gross domestic product of the United States. The results suggest that the RWHAP plays a critical and cost-effective role in the United States' public health response to the HIV epidemic.

This study aimed to compare the gap between gender role values and domestic practice in the UK and Spain. The data were drawn from a sample of British and Spanish male and female respondents to the International Social Survey Programme’s (ISSP) ‘Family and Changing Gender Roles’ module (2002, 2012) and used to create multivariate models using ordinary least-squares regression techniques. The findings suggest that gender role values impacts domestic practice: more time is devoted to housework by egalitarian than non-egalitarian men and less by egalitarian than non-egalitarian women. That effect was not observed for care-giving, however. The impact of gender values on the division by sex of household chores was found to be similar in the UK and Spain. A gradual move to more egalitarian ideals was also observed in both countries over the 10 year period studied., Este trabajo tiene como objetivo comparar la brecha entre los valores de género y la práctica doméstica en el Reino Unido y España. Los datos se obtuvieron de una muestra de encuestados británicos y españoles, hombres y mujeres, en el módulo “Familia y cambio de roles de género” del Programa Internacional de Encuestas Sociales (ISSP 2002; 2012) y se utilizaron para crear modelos multivariantes utilizando técnicas de regresión de mínimos cuadrados ordinarios. Los hallazgos sugieren que los valores de género afectan a las prácticas domésticas. Sin embargo, este efecto no se observó para el cuidado. Se encontró que el impacto de los valores de género en la división por sexo de las tareas domésticas era similar en el Reino Unido y España. También se observó un movimiento gradual hacia ideales más igualitarios en ambos países durante el período de 10 años estudiado., Funding for this study was provided in the form of a José Castillejo visiting scholar grant at University College London (JC2015-00048) and by the Spanish Ministry of Economy and Competitiveness under the project entitled ‘El cuidado de niños/as menores de 7 años en España’ (CSO2017-84634-R).

This study aimed to compare the gap between gender role values and domestic practice in the UK and Spain. The data were drawn from a sample of British and Spanish male and female respondents to the International Social Survey Programme’s (ISSP) ‘Family and Changing Gender Roles’ module (2002, 2012) and used to create multivariate mod­els using ordinary least-squares regression techniques. The findings suggest that gender role values impacts domestic practice: more time is devoted to housework by egalitar­ian than non-egalitarian men and less by egalitarian than non-egalitarian women. That effect was not observed for care-giving, however. The impact of gender values on the division by sex of household chores was found to be similar in the UK and Spain. A gradual move to more egalitarian ideals was also observed in both countries over the 10 year period studied. Este trabajo tiene como objetivo comparar la brecha entre los valores de género y la práctica doméstica en el Reino Unido y España. Los datos se obtuvieron de una muestra de encuestados británicos y españoles, hombres y mu­jeres, en el módulo “Familia y cambio de roles de género” del Programa Internacional de Encuestas Sociales (ISSP 2002; 2012) y se utilizaron para crear modelos multivari­antes utilizando técnicas de regresión de mínimos cuadra­dos ordinarios. Los hallazgos sugieren que los valores de género afectan a las prácticas domésticas. Sin embargo, este efecto no se observó para el cuidado. Se encontró que el impacto de los valores de género en la división por sexo de las tareas domésticas era similar en el Reino Unido y España. También se observó un movimiento gradual ha­cia ideales más igualitarios en ambos países durante el período de 10 años estudiado.

Data repositories and research networks worldwide are publishing a diverse array of long-term and experimental data for meaningful reuse, repurpose, and integration. However, in synthesis research ...

Despite growing recognition of the importance of public data to the modern economy and to scientific progress, long-term investment in the repositories that manage and disseminate scientific data in easily accessible-ways remains elusive. Repositories are asked to demonstrate that there is a net value of their data and services to justify continued funding or attract new funding sources. Here, representatives from a number of environmental and Earth science repositories evaluate approaches for assessing the costs and benefits of publishing scientific data in their repositories, identifying various metrics that repositories typically use to report on the impact and value of their data products and services, plus additional metrics that would be useful but are not typically measured. We rated each metric by (a) the difficulty of implementation by our specific repositories and (b) its importance for value determination. As managers of environmental data repositories, we find that some of the most easily obtainable data-use metrics (such as data downloads and page views) may be less indicative of value than metrics that relate to discoverability and broader use. Other intangible but equally important metrics (e.g., laws or regulations impacted, lives saved, new proposals generated), will require considerable additional research to describe and develop, plus resources to implement at scale. As value can only be determined from the point of view of a stakeholder, it is likely that multiple sets of metrics will be needed, tailored to specific stakeholder needs. Moreover, economically based analyses or the use of specialists in the field are expensive and can happen only as resources permit.

The idea of harmonizing data is not new. Decades of amassing data in databases according to community standards - both locally and globally - have been more successful for some research domains than others. It is particularly difficult to harmonize data across studies where sampling protocols vary greatly and complex environmental conditions need to be understood to apply analytical methods correctly. However, a body of long-term ecological community observations is increasingly becoming publicly available and has been used in important studies. Here, we discuss an approach to preparing harmonized community survey data by an environmental data repository, in collaboration with a national observatory. The workflow framework and repository infrastructure are used to create a decentralized, asynchronous model to reformat data without altering original data through cleaning or aggregation, while retaining metadata about sampling methods and provenance, and enabling programmatic data access. This approach does not create another data ‘silo’ but will allow the repository to contribute subsets of available data to a variety of different analysis-ready data preparation efforts. With certain limitations (e.g., changes to the sampling protocol over time), data updates and downstream processing may be completely automated. In addition to supporting reuse of community observation data by synthesis science, a goal for this harmonization and workflow effort is to contribute these datasets to the Global Biodiversity Information Facility (GBIF) to increase the data's discovery and use.