69 research outputs found

    Somos todos mortais : o coronavírus e a natureza aberta da história

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    Publicação original em espanhol: SEGATO, Rita Laura. Todos somos mortales: el coronavirus y la naturaleza abierta de la historia. In: KASSIR, Alessandra et al. Alerta Global. Políticas, movimentos sociales y futuros en disputa en tempos de pandemia. Editado por Breno Bringel e Geoffrey Pleyers. Ciudad Autónoma de Buenos Aires: CLACSO; Lima: ALAS; 2020.No presente ensaio Rita Segato mobiliza um conjunto de interpretações sobre o possível significado da pandemia do novo coronavírus, em que ele é compreendido como: 1) catalisador de um colapso da ilusão neoliberal; 2) justificativa para a imposição de um estado de exceção; 3) “solução final”; 4) acessório de uma abordagem bélica de estabelecimento de novos inimigos; 5) sintoma da forma insustentável como tratamos o meio ambiente; e 6) arauto da necessidade de uma politicidade em chave feminina. Todas elas, entretanto, estariam fundadas numa vontade de onipotência: a de enquadrar a história em um rumo previsível. Diante da incomunicabilidade deste evento do presente, ela defende como prioridade a abertura para o imprevisível, e a proteção da vida no aqui e agora.In this essay Rita Segato mobilizes a set of interpretations about the possible meaning of the new coronavirus pandemic, in which it is understood as: 1) a catalyst for a collapse of the neoliberal illusion; 2) a justification for the imposition of a state of exception; 3) a "final solution"; 4) an accessory of a warlike approach to the establishment of new enemies; 5) a symptom of the unsustainable way we treat the environment; and 6) a herald of the need for a feminine key politicity. All of them, however, would be based on a will of omnipotence: that of framing history in a predictable course. Faced with the incommunicability of this present event, she defends as a priority the openness to the unpredictable, and the protection of life in the here and now

    Genetic newborn screening and digital technologies: A project protocol based on a dual approach to shorten the rare diseases diagnostic path in Europe.

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    Since 72% of rare diseases are genetic in origin and mostly paediatrics, genetic newborn screening represents a diagnostic "window of opportunity". Therefore, many gNBS initiatives started in different European countries. Screen4Care is a research project, which resulted of a joint effort between the European Union Commission and the European Federation of Pharmaceutical Industries and Associations. It focuses on genetic newborn screening and artificial intelligence-based tools which will be applied to a large European population of about 25.000 infants. The neonatal screening strategy will be based on targeted sequencing, while whole genome sequencing will be offered to all enrolled infants who may show early symptoms but have resulted negative at the targeted sequencing-based newborn screening. We will leverage artificial intelligence-based algorithms to identify patients using Electronic Health Records (EHR) and to build a repository "symptom checkers" for patients and healthcare providers. S4C will design an equitable, ethical, and sustainable framework for genetic newborn screening and new digital tools, corroborated by a large workout where legal, ethical, and social complexities will be addressed with the intent of making the framework highly and flexibly translatable into the diverse European health systems

    Disability, fatigue, pain and their associates in early diffuse cutaneous systemic sclerosis: the European Scleroderma Observational Study

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    Objectives; Our aim was to describe the burden of early dcSSc in terms of disability, fatigue and pain in the European Scleroderma Observational Study cohort, and to explore associated clinical features. Methods; Patients completed questionnaires at study entry, 12 and 24 months, including the HAQ disability index (HAQ-DI), the Cochin Hand Function Scale (CHFS), the Functional Assessment of Chronic Illness Therapy-fatigue and the Short Form 36 (SF36). Associates examined included the modified Rodnan skin score (mRSS), current digital ulcers and internal organ involvement. Correlations between 12-month changes were also examined. Results; The 326 patients recruited (median disease duration 11.9 months) displayed high levels of disability [mean (S.D.) HAQ-DI 1.1 (0.83)], with ‘grip’ and ‘activity’ being most affected. Of the 18 activities assessed in the CHFS, those involving fine finger movements were most affected. High HAQ-DI and CHFS scores were both associated with high mRSS (ρ = 0.34, P < 0.0001 and ρ = 0.35, P < 0.0001, respectively). HAQ-DI was higher in patients with digital ulcers (P = 0.004), pulmonary fibrosis (P = 0.005), cardiac (P = 0.005) and muscle involvement (P = 0.002). As anticipated, HAQ-DI, CHFS, the Functional Assessment of Chronic Illness Therapy and SF36 scores were all highly correlated, in particular the HAQ-DI with the CHFS (ρ = 0.84, P < 0.0001). Worsening HAQ-DI over 12 months was strongly associated with increasing mRSS (ρ = 0.40, P < 0.0001), decreasing hand function (ρ = 0.57, P < 0.0001) and increasing fatigue (ρ = −0.53, P < 0.0001). Conclusion; The European Scleroderma Observational Study highlights the burden of disability in early dcSSc, with high levels of disability and fatigue, associating with the degree of skin thickening (mRSS). Impaired hand function is a major contributor to overall disability

    Treatment outcome in early diffuse cutaneous systemic sclerosis: the European Scleroderma Observational Study (ESOS).

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    OBJECTIVES: The rarity of early diffuse cutaneous systemic sclerosis (dcSSc) makes randomised controlled trials very difficult. We aimed to use an observational approach to compare effectiveness of currently used treatment approaches. METHODS: This was a prospective, observational cohort study of early dcSSc (within three years of onset of skin thickening). Clinicians selected one of four protocols for each patient: methotrexate, mycophenolate mofetil (MMF), cyclophosphamide or 'no immunosuppressant'. Patients were assessed three-monthly for up to 24 months. The primary outcome was the change in modified Rodnan skin score (mRSS). Confounding by indication at baseline was accounted for using inverse probability of treatment (IPT) weights. As a secondary outcome, an IPT-weighted Cox model was used to test for differences in survival. RESULTS: Of 326 patients recruited from 50 centres, 65 were prescribed methotrexate, 118 MMF, 87 cyclophosphamide and 56 no immunosuppressant. 276 (84.7%) patients completed 12 and 234 (71.7%) 24 months follow-up (or reached last visit date). There were statistically significant reductions in mRSS at 12 months in all groups: -4.0 (-5.2 to -2.7) units for methotrexate, -4.1 (-5.3 to -2.9) for MMF, -3.3 (-4.9 to -1.7) for cyclophosphamide and -2.2 (-4.0 to -0.3) for no immunosuppressant (p value for between-group differences=0.346). There were no statistically significant differences in survival between protocols before (p=0.389) or after weighting (p=0.440), but survival was poorest in the no immunosuppressant group (84.0%) at 24 months. CONCLUSIONS: These findings may support using immunosuppressants for early dcSSc but suggest that overall benefit is modest over 12 months and that better treatments are needed. TRIAL REGISTRATION NUMBER: NCT02339441

    The natural history of Madagascar

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    Travail et identités dans les villes du Tiers Monde : 2. En quête des identités ouvrières

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    Dans l'Etat de Sao-Paulo, contrairement aux autres Etats du Brésil, les travailleurs manuels temporaires de l'agriculture ont perdu tout accès à la terre : là réside leur spécificité. A travers l'analyse de cette situation récente, l'auteur fait apparaître la naissance de nouvelles revendications, et de nouvelles modalités de représentation au plan syndical. (Résumé d'auteur
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