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BACKGROUND: In recent years, patient-reported outcomes (PROs) have received increasing prominence in cardiovascular research and clinical care. An understanding of the variability and global experience of PROs in adults with congenital heart disease (CHD), however, is still lacking. Moreover, information on epidemiological characteristics and the frailty phenotype of older adults with CHD is minimal. The APPROACH-IS II study was established to address these knowledge gaps. This paper presents the design and methodology of APPROACH-IS II. METHODS/DESIGN: APPROACH-IS II is a cross-sectional global multicentric study that includes Part 1 (assessing PROs) and Part 2 (investigating the frailty phenotype of older adults). With 53 participating centers, located in 32 countries across six continents, the aim is to enroll 8000 patients with CHD. In Part 1, self-report surveys are used to collect data on PROs (e.g., quality of life, perceived health, depressive symptoms, autonomy support), and explanatory variables (e.g., social support, stigma, illness identity, empowerment). In Part 2, the cognitive functioning and frailty phenotype of older adults are measured using validated assessments. DISCUSSION: APPROACH-IS II will generate a rich dataset representing the international experience of individuals in adult CHD care. The results of this project will provide a global view of PROs and the frailty phenotype of adults with CHD and will thereby address important knowledge gaps. Undoubtedly, the project will contribute to the overarching aim of improving optimal living and care provision for adults with CHD. ispartof: International Journal Of Cardiology vol:363 pages:30-39 ispartof: location:Netherlands status: published

Wearing black make-up to impersonate black individuals has become highly controversial in many countries, even when it is part of long-standing cultural traditions. Prominent examples of such traditions include Saint Nicolas celebrations in the Netherlands (which feature a black character known as “Black Pete” who hands out candy to children), Epiphany parades in Spain (which feature impersonations of the biblical king Balthasar who is traditionally portrayed as black) and the annual Zulu parade in New Orleans (which features impersonations of South African Zulu warriors). In this article, I challenge the widely held view that black make-up traditions are categorically wrong. Specifically, I argue that these traditions can be morally vindicated if (i) the large majority of individuals who help to maintain them do not believe that they denigrate black people; (ii) the relevant traditions do not depict black people in denigrating ways; and (iii) the relevant traditions are not gratuitously offensive. While the Dutch Saint Nicholas tradition fails to satisfy these conditions, the New Orleans Zulu tradition is found to satisfy them, as is the Spanish Epiphany tradition in certain cases. I end by identifying another set of conditions under which black make-up traditions might be morally justified.

Atmospheric metal pollution is a major health concern whose roots pre-date industrialization. This study pertains the analyses of ancient human skeletons and compares them with natural archives to trace historical environmental exposure at the edge of the Roman Empire in NW Iberia. The novelty of our approach relies on the combination of mercury, lead and lead isotopes. We found over a 700-year period that rural Romans incorporated two times more mercury and lead into their bones than post-Romans inhabiting the same site, independent of sex or age. Atmospheric pollution sources contributed on average 57% (peaking at 85%) of the total lead incorporated into the bones in Roman times, which decreased to 24% after the decline of Rome. These values and accompanying changes in lead isotopic composition mirror changes in atmospheric Pb deposition recorded in local peatlands. Thus, skeletons are a time-transgressive archive reflecting contaminant exposure. info:eu-repo/semantics/published SCOPUS: ar.j

In order to design effective instruction and feedback for synthesis writing on both writing processes and products, a clear insight into synthesis writing processes underlying a high-quality synthesis text is crucial. That is why this study, as one of the first, examines the use of sources during synthesis writing processes, and its effect on text quality. The writing processes of 294 Dutch secondary students (grade 10–12) were logged using keystroke logging software Inputlog. Two different synthesis text genres were investigated of which three source-related process measures were analysed: the relative time spent in the sources, the transitions per minute between the sources, and the transitions per minute between the synthesis text and the sources. First, the study explored the effect of temporal distribution and genre (argumentative or informative synthesis) on the writing process, providing insights into the distribution of source-related writing activities over the process intervals and the possible influence of genre on this distribution. Secondly, the individual source-related process measures were linked to text quality. Thirdly, via polynomial regression analyses, the various source-related activities and their temporal distribution were taken into account in an integrated way to identify patterns of effective source use. These patterns vary across genre and explain a considerable amount of variance in the data (24.6% for argumentative synthesis texts, 16.2% for informative synthesis texts). Our findings can be used to develop process-oriented feedback, giving students an insight into their synthesis writing process. ispartof: Reading And Writing vol:33 issue:2 pages:239-269 status: Published online

Zika Preparedness Latin American Network (ZikaPLAN) is a research consortium funded by the European Commission to address the research gaps in combating Zika and to establish a sustainable network with research capacity building in the Americas. Here we present a report on ZikaPLAN`s mid-term achievements since its initiation in October 2016 to June 2019, illustrating the research objectives of the 15 work packages ranging from virology, diagnostics, entomology and vector control, modelling to clinical cohort studies in pregnant women and neonates, as well as studies on the neurological complications of Zika infections in adolescents and adults. For example, the Neuroviruses Emerging in the Americas Study (NEAS) has set up more than 10 clinical sites in Colombia. Through the Butantan Phase 3 dengue vaccine trial, we have access to samples of 17,000 subjects in 14 different geographic locations in Brazil. To address the lack of access to clinical samples for diagnostic evaluation, ZikaPLAN set up a network of quality sites with access to well-characterized clinical specimens and capacity for independent evaluations. The International Committee for Congenital Anomaly Surveillance Tools was formed with global representation from regional networks conducting birth defects surveillance. We have collated a comprehensive inventory of resources and tools for birth defects surveillance, and developed an App for low resource regions facilitating the coding and description of all major externally visible congenital anomalies including congenital Zika syndrome. Research Capacity Network (REDe) is a shared and open resource centre where researchers and health workers can access tools, resources and support, enabling better and more research in the region. Addressing the gap in research capacity in LMICs is pivotal in ensuring broad-based systems to be prepared for the next outbreak. Our shared and open research space through REDe will be used to maximize the transfer of research into practice by summarizing the research output and by hosting the tools, resources, guidance and recommendations generated by these studies. Leveraging on the research from this consortium, we are working towards a research preparedness network. ispartof: GLOBAL HEALTH ACTION vol:12 issue:1 ispartof: location:United States status: published

Sourd et non désiré? caractéristiques au mariage des personnes sourdes en belgique aux xviiie et xixe siècles: une approche comparative et interrégionale Les éléments caractéristiques, à leur mariage, des femmes et des hommes sourds, nés en Belgique aux XVIIIe et XIXe siècles, sont comparés les uns aux autres, ainsi qu'avec un groupe de frères et sœurs non-sourds et avec un groupe de sourds et sourdes suédois. L'objectif de cet article est de déterminer dans quelle mesure le modèle de mariage des personnes sourdes s'alignait sur celui des personnes non handicapées et de voir comment l'expérience de leur invalidité a pu interagir sur l'environnement dans lequel elles habitaient. Nous remettons ici en question la croyance en quelque universalité dans l'expérience d'invalidité, faisant valoir que même si les personnes sourdes rencontraient généralement plus de difficultés que les valides à trouver un conjoint, leurs chances de trouver un partenaire dépendaient de façon significative de leurs caractéristiques personnelles telles que sexe, milieu de vie et date de naissance. En tant que tel, nous démontrons que la relation entre surdité et personne vulnérable sur le marché matrimonial n'était en rien incontournable, mais était en fait produite par des environnements bien spécifiques. Stumm und ungewollt? heiratsmerkmale tauber menschen im belgien des 18. und 19. jahrhunderts: ein vergleichender und interregionaler ansatz In diesem Beitrag werden die Heiratsmerkmale von tauben Männern und Frauen, die im Belgien des 18. und 19. Jahrhunderts geboren wurden, einerseits miteinander und andererseits mit einer Gruppe nicht-tauber Geschwister sowie einer Gruppe tauber Menschen in Schweden verglichen. Ziel ist es zu bestimmen, in welchem Umfang die Heiratsmuster tauber Menschen denen nicht-tauber Menschen entsprachen, und herauszufinden, wie die Erfahrungen der Behinderung mit der Umgebung zusammenhingen, in der die Menschen wohnten. Der Beitrag bezweifelt die Vorstellung einer allumfassenden Behinderungserfahrung und behauptet stattdessen, dass trotz der größeren Schwierigkeiten tauber Menschen, einen Heiratspartner zu finden, ihre Heiratschancen entscheidend von anderen persönlichen Merkmalen wie z.B. Geschlecht, Lebensumständen und Geburtsdatum abhingen. In diesem Sinne lässt sich zeigen, dass die Verknüpfung zwischen dem Taubsein und der Verwundbarkeit auf dem Heiratsmarkt nicht unausweichlich, sondern das Ergebnis besonderer Umweltbedingungen war. In this article, the marriage characteristics of deaf men and women born in eighteenth- and nineteenth-century Belgium are compared to each other, as well as to a group of non-deaf siblings and a group of Swedish deaf persons. The aim is to determine the extent to which the marriage pattern of deaf persons lined up with that of non-disabled persons and to see how experiences of disablement interacted with the environment in which persons dwelt. This article challenges the belief in a universal disability experience by arguing that although deaf individuals generally encountered more difficulties in finding a marriage partner, marriage chances were significantly dependent on personal characteristics such as gender, living environment and birth date. As such, we demonstrate that the relationship between being deaf and being vulnerable on the marriage market was not an inescapable one, but the product of specific environments.