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congenital bleeding disorders

Background - In Italy, the National Register of Congenital Coagulopathies (NRCC) collects epidemiological and therapeutic data from patients affected by haemophilia A (HA), haemophilia B (HB), von Willebrand's disease (vWD) and other rare coagulation disorders. Here we present data from the 2016 annual survey. Materials and methods - Data are provided by the Italian Haemophilia Centres, on a voluntary basis. Information flows from every Centre to a web-based platform of the Italian Association of Haemophilia Centres, shared with the Italian National Institute of Health, in accordance with current privacy laws. Patients are classified by diagnosis, disease severity, age, gender and treatment-related complications. Results - In 2016, the total number of patients with congenital coagulopathies in the NRCC was 10,360: 39.8% of these patients had HA, 31.5% had vWD, 8.5% had HB, and 20.2% had less common factor deficiencies. The overall prevalence of HA and HB was 13.9/100,000 males and 3.0/100,000 males, respectively. The overall prevalence of vWD was 5.4/100,000 inhabitants. During 2016, 126 patients had current alloantibodies to factor VIII (FVIII) or factor IX (FIX) and were under treatment with bypassing agents and/or immune tolerance induction. Overall, 388 patients with a history of alloantibodies were recorded in the NRCC of whom 337 with severe HA and 12 with severe HB. Coagulation factor use, evaluated from treatment plans, was approximately 451,000,000 IU of FVIII for HA patients (7.5 IU/inhabitant), and approximately 53,000,000 IU of FIX for HB patients (0.9 IU/inhabitant). Discussion - The prevalences of HA and HB fall within the ranges reported in more developed countries; the consumption of FVIII and FIX was in line with that of other European countries (France, United Kingdom) and Canada. The NRCC, with its bleeding disorder dataset, is a helpful tool for shaping public health policies, as well as planning clinical and epidemiological research projects.

COVID-19 has shaken the world. Countless lives have been lost or devastated, and as of November 2020, the pandemic shows little sign of abatement. Emergency responses across the world have led to drastic changes in local and global development trajectories within a very short period of time. Yet precisely how these changes will take shape depends on underlying historical and socio-economic forces that must become part of our understanding of, and plans for, a world beyond COVID-19.

Participatory methods can be used to build food system resilience. However, it is widely acknowledged that these methods are usually highly time and resource consuming, which reduces their applicability. This study developed a novel rapid participatory system mapping method to elicit system conceptualizations from distinct value chain actors. This study also tested the method in a case study of rice value chains in Benue State, Nigeria. Participant evaluations of the rapid participatory system mapping method provide evidence of this method’s potential to contribute to resilience building by facilitating social learning, informing better decision making, and promoting community problem solving. These contributions especially strengthen the two resilience factors of social self-organization and reflective and shared learning. This novel rapid participatory system mapping method can be used in the future as a self-standing research approach, or to complement other participatory methods of food system resilience building.

This article advances academic and policy debates on peri-urban agriculture (PUA) by examining the phenomenon in the city of Sogamoso, Colombia. Planners, developers, and local authorities in Sogamoso have explicitly framed PUA as a barrier to development: a backwards, localized, low-tech and economically poorly performing activity that needs to make space for a more ‘productive’ ‘modern’ economy. Based on a survey of 160 peri-urban farming and gardening households, this study identifies PUA forms of food self-provisioning and exchange (FSPE) and further characterizes the practice’s social embeddedness, barriers, and opportunities as perceived by peri-urban farmers. The article combines scholarship on PUA and ‘quiet sustainability’ (Smith and Jehlicka, 2013) to propose a novel perspective that could help transform the terms of discourse on the role and future of PUA in urban sustainable development from arguments founded in productivity metrics to the appreciation of FSPE as an environmentally sustainable practice that strengthens the social fabric of local communities, thus contributing to their sense of purpose, meaning, and resilience. This study has implications not only for Sogamoso, but also for many other cities in Latin America and the Global South, where the role of PUA in relation to sustainable urban development is being actively contested.

Resumen Este artículo representa un avance en los debates científicos y políticos sobre la agricultura periurbana (APU), al examinar el fenómeno en la ciudad de Sogamoso, Colombia. Los planificadores, desarrolladores y autoridades de este municipio han retratado explícitamente a la APU como una barrera para el desarrollo, tipificándola como una actividad atrasada, localizada, de baja tecnología y de bajo rendimiento económico que necesita dar espacio a una economía más productiva y moderna. Basado en una encuesta de 160 hogares periurbanos que se dedican a la agricultura, este estudio identifica las formas de autoabastecimiento e intercambio de alimentos (AIDE) y además caracteriza el arraigo social, las dificultades y las oportunidades implícitas en la práctica de la APU, según los perciben los agricultores periurbanos. Combinando literatura sobre la APU y sostenibilidad silenciosa, este artículo plantea una perspectiva novedosa tendiente a transformar el discurso alrededor del papel de APU y su futuro en el desarrollo sostenible urbano. Además, propone remplazar los argumentos fundamentados en métricas de productividad por una perspectiva que valore el AIDE como una práctica ambientalmente sostenible que fortalece el tejido social de las comunidades locales, contribuyendo así a su sentido de propósito y resiliencia. Este estudio tiene implicaciones no solo para Sogamoso, sino también para muchas otras ciudades de América Latina y del Sur Global, donde el papel de la APU, en relación con el desarrollo urbano sostenible, está activamente cuestionado. Abstract This article advances academic and policy debates on peri-urban agriculture (PUA) by examining the phenomenon in the city of Sogamoso, Colombia. Planners, developers, and local authorities in Sogamoso have explicitly framed PUA as a barrier to development: a backwards, localized, low-tech and economically poorly performing activity that needs to make space for a more “productive” “modern” economy. Based on a survey of 160 peri-urban farming and gardening households, this study identifies PUA forms of food self-provisioning and exchange (FSPE) and further characterizes the practice’s social embeddedness, barriers, and opportunities as perceived by peri-urban farmers. The article combines scholarship on PUA and ‘quiet sustainability’ to propose a novel perspective that could help transform the terms of discourse on the role and future of PUA in urban sustainable development from arguments founded in productivity metrics to the appreciation of FSPE as an environmentally sustainable practice that strengthens the social fabric of local communities, thus contributing to their sense of purpose, meaning, and resilience. This study has implications not only for Sogamoso, but also for many other cities in Latin America and the Global South, where the role of PUA in relation to sustainable urban development is being actively contested.

Calls for agri-food system sustainability transitions abound and increasingly draw attention to the need for addressing deeply ingrained social, cultural and economic logics that drive unsustainability, and specifically political economy of the systems of provision. Yet, the analytical conceptualization of diversity with regards to capitalism in agri-food systems remains limited. This paper fills this gap by proposing and illustrating a framework for recognizing capitalist, alternative capitalist, and non-capitalist configurations in enterprises, cooperatives, associations, and other socioeconomic entities in agri-food systems. The framework is informed by poststructuralist theories of capitalism and development, as well as by other analyses and critiques of capitalism rooted in relational understandings of society-in-nature. It entails the following dimensions: (a) ontology: space, time, human nature, logic of relation; (b) economic relations: enterprise, labour, economic transactions, Property, finance; (c) relation with the State: participation in regulation and legitimation; (d) knowledge. The application of the framework to cases of community supported agriculture (CSA) shows the coexistence of capitalist, alternative-capitalist or non-capitalist elements in CSA initiatives. Distinct CSA initiatives show different configurations of the framework's elements. In some cases, configurations changed over time as a result of tensions between actors, or between the CSA and its context. The uncovering of these dynamics proves that the framework can be a valuable tool for recognizing diversity beyond capitalism in a given food initiative.

This chapter engages with the existing literature on urban agriculture and with concrete case studies to examine current challenges and ways forward for the sustainability assessment of urban agriculture. The chapter identifies current conceptualizations of urban agriculture, and sustainability assessment methods, and discusses them in the light of normative, systemic, and procedural dimensions of sustainability assessment. The chapter addresses the following questions: • How can urban agriculture be conceptualized? In particular, are there important conceptual differences between urban agriculture in the Global North and South, or between distinct forms of urban agriculture? • How can the sustainability of urban agriculture be assessed? What methodological differences, if any, should be taken into consideration in assessing different forms of urban agriculture in distinct urban contexts? • What are the current challenges and what are the opportunities for improving the sustainability assessment of urban agriculture? The study finds that there is a paucity of assessment methods that have been developed specifically for urban agriculture and are flexible enough to be immediately applicable for different forms of urban agriculture in different contexts. This chapter suggests some opportunities to move the practice of sustainability assessment of urban agriculture forward. These include the adoption of inter- and transdisciplinary research strategies, and a critical approach to urban agriculture practices, power relations, social norms, and institutional conditions that have developed over time in specific contexts. A reflexive research approach and “dedicated investigation strategies” may also go a long way in supporting the sustainability assessment of urban agriculture.

This study examines shrimp farmer behaviour in relation to production intensity along the eastern coast of the Gulf of Thailand, and its embeddedness in the wider socio-economic context of shrimp farming households. The integrative agent-centred (IAC) framework was used as a basis for designing a structured survey to collect semi-quantitative data for a range of explanatory variables that potentially drive shrimp farmer behaviour. The results show that shrimp farming intensity is associated with a combination of technical (e.g. farm area, pond size, stocking density and production), economic (shrimp selling price, production costs and farm revenue), social (e.g. farm operating years, the use of family labour, engagement in shrimp farming and with other shrimp farmers), and ecological factors (e.g. farmer reliance on natural pond productivity, and constraints brought about by environmental change and fluctuations in productive areas). In addition, the results indicate that a number of external and internal socio-economic factors are related to the decision to adopt a certain level of production intensity, including training received on farming practices, access to technical equipment, proportion of total income from shrimp farming, season-specific changes in production, risk perception, and subjective culture (social norms and roles). This study therefore illustrates that levels of shrimp farming intensity are in fact an indicator of a diversity of socio-economic conditions and behavioural choices, which need to be targeted by sustainability policies differentially and beyond the technical sphere. In showing this, we conclude that national standards aimed at achieving aquaculture sustainability should be designed to reflect the diversity needed to support such a diverse sector, and should be adjustable to better represent different socio-economic contexts.

Degrowth is incompatible with modern capitalist socioecological configurations, and in fact requires their ‘unmaking’ to open space for post-growth and post-capitalist alternatives. The concept of ‘decolonization of the imaginary’ has captured an element of unmaking in the degrowth debate; however, this concept remains underdeveloped, and thus falls short of providing an analytical basis to understand the range of interconnected, multi-level, and multidimensional processes that make space for radical alternatives to modern capitalist socioecological configurations. This paper engages with literature from across the social sciences on various forms of deconstruction, destabilization, displacement, or unmaking of the social and socio-ecological order, most of which was preciously unexplored in the degrowth debate. By building on that literature, this paper suggests a richer and more insightful approach to conceptualizing the unmaking of modern capitalist socioecological configurations, thus specifying and refining the notion of decolonization of the imaginary. The insights are distilled in five propositions: (i) unmaking is a combination of emergent, situated processes; (ii) processes of unmaking involve both symbolic and material deconstruction; (iii) unmaking is a contradictory personal experience; (iv) unmaking is often hidden, but can be used strategically; and (v) unmaking is generative.