The Portuguese National Registry for Hemophilia: Developing of a Web-based Technological Solution

AbstractThe crucial role that patient records have in the management of the rare and chronic diseases greatly increases the need to create mechanisms to facilitate the identification and management of the patient's data. Hemophilia is an X-linked congenital bleeding disorder caused by a deficiency of coagulation factor that affects the population on a ratio of 1 case for 10,000 people born. Currently, there are several countries with technological platforms to support the National Patients’ Registries (NPR) of Hemophilia and other Congenital Coagulopathies (HoCC), due to its benefits in the management of the disease. This work presents the technological platform developed in a joint initiative between the University of Aveiro (UA) and the Portuguese Association of Congenital Coagulopathies (PACC), with the purpose of creating the first NPR with HoCC in Portugal. This web application is hosted in the data center of the University of Aveiro, and is being used by the clinicians of the different Hemophilia Treatment Centers (HTC) across the country

Loss to follow-up in registries of rheumatic patients treated with biologics : a potential information bias in assessing pharmacovigilance and efficacy outcomes

© 2001-2021 Sociedade Portuguesa de Reumatologia.Background: The information associated with loss to follow-up (LFU) patients may affect real-world data evaluation of the use of biologics that is not being adequately captured in registries. Methods: We identified all patients(Pts) treated with biologics in our center who had no visits registered for more than 6 months, in the Rheumatic Diseases Portuguese Register, Reuma.pt. We retrieved baseline information from Reuma.pt and from the hospital electronic clinical record. We then performed a telephonic interview to characterize the reasons for LFU at our day care unit. For Pts unable to be contacted by telephone a letter of invitation to an appointment at the hospital was sent. Results: From a total of 794 Ptsregistered in Reuma.pt at our center with active biologic therapy 227 did not have any information registered in the last 6 months. Of this, 36 Pts were on biologic therapy prescribed by other departments and maintained follow-up in these departments. 102 Pts had suspended biologic administration by medical indication and this information was registered in the hospital electronic clinical records but not updated in Reuma.pt. For 89 Pts no information could be retrieved from either the hospital electronic clinical record or Reuma.pt and we classified these Pts as true LFU. 26 of these LFU Pts were being followed up in another Rheumatology center. 26 of the LFU Pts died. 11 Pts had an adverse effect. 4 Pts of the LFU were considering to be in remission. We were not able to contact 15 of the LFU pts. Conclusion: Identifying LFU Pts and clarifying the reason for the loss of data in a register contributes to a better knowledge on strategies to discontinue biologics in stable pts, to a better pharmacovigilance of adverse effects and to more efficiency in data capture by registries. Due to data protection reasons it was impossible to have access to the Pts's death certificates.info:eu-repo/semantics/publishedVersio

Relating physicochemical and microbiological safety indicators during processing of linguiça, a Portuguese traditional dry-fermented sausage

Linguiça is a Portuguese traditional fermented sausage whose microbiological quality and safety can be highly variable. In order to elucidate risk factors and the particularities of the manufacturing technology that explain the between-batch variability in total viable counts (TVC), Enterobacteriaceae, Staphylococcus aureus and Listeria monocytogenes in the product; microbiological and physicochemical characterisation of linguiça at five stages of production (i.e., raw pork meat, mixed with ingredients, macerated, smoked and ripened) was carried out. A total of six production batches were surveyed from two factories; one utilised curing salts and polyphosphate in their formulation (Factory II). The delayed fermentation in the nitrite-formulated sausages was partly responsible for the increase (p < 0.01) in Enterobacteriaceae, S. aureus and L. monocytogenes from raw meat (3.21logCFU/g, 1.30logCFU/g and 22.2CFU/g, respectively) to the end of maceration (4.14logCFU/g, 2.10logCFU/g and 140CFU/g, respectively) while the better acidification process in the nitrite-free sausages (Factory I) led to lower counts of S. aureus (2.64logCFU/g) and L. monocytogenes (10CFU/g) in the finished products. In Factory II, although L. monocytogenes entered the chain at the point of mixing, it became steadily inactivated during smoking and ripening ( < 50CFU/g), despite the initially-delayed fermentation. Nitrite had a strong effect on reducing Enterobacteriaceae throughout smoking (r=-0.73) and ripening (r=-0.59), while it failed to control the growth of S. aureus. The main hurdle preventing the development of S. aureus in linguiça is the pH, and other factors contributing to its control are: longer ripening days (p=0.019), low S. aureus in raw meat (p=0.098), properly-washed casings (p=0.094), and less contamination during mixing (p=0.199). In the case of L. monocytogenes, at least three hurdles hinder its development in linguiça: low a w (p=0.004), low pH (p=0.040) and nitrite (p=0.060), and other factors contributing to its control are: longer ripening (p=0.072) and maceration (p=0.106) periods, lower a w at the end of smoking (p=0.076) and properly-washed casings (p=0.099). Results have shown that there is a need to standardise the productive process of linguiça, to optimise the initial acidification process, and to reinforce proper programmes of quality control of ingredients and good hygiene practices, so as to minimise the introduction of Enterobacteriaceae and pathogens from external sources.This research was supported through the project PTDC/AGR-TEC/3107/2012, awarded by the Portuguese Foundation for Science and Technology (FCT), European Regional Development Funds (ERDF). Dr. Gonzales-Barron also acknowledges the financial support provided by FCT through the award of a five-year Investiginfo:eu-repo/semantics/publishedVersio

Rheumatology practice amidst the COVID-19 pandemic : a pragmatic view

© Author(s) (or their employer(s)) 2020. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.The coronavirus disease 2019 (COVID-19) pandemic has come with many challenges for healthcare providers and patients alike. In addition to the direct burden it has placed on societies and health systems, it had a significant impact in the care of patients with chronic diseases, as healthcare resources were deployed to fight the crisis, and major travel and social restrictions were adopted. In the field of rheumatology, this has required notable efforts from departments and clinicians to adapt to the novel status quo and assure the follow-up of patients with rheumatic and musculoskeletal diseases. In the present viewpoint, we provide a practical approach to tackle this reality. Key measures include setting up preventive team management strategies, optimising communication with patients and reorganising patient care in all its dimensions. We then anticipate the nuances of rheumatology practice as restrictive measures are progressively lifted, while an effective vaccine is still pending. This includes the need to reimpose the same strategy as further waves unfold. Finally, we look ahead and address the lessons we can incorporate into post-COVID-19 rheumatology.info:eu-repo/semantics/publishedVersio

Nurses' perceptions of aids and obstacles to the provision of optimal end of life care in ICU

Contains fulltext : 172380.pdf (publisher's version ) (Open Access

“Ornitorrinco de la prosa”: presencia del periodismo literario en la crónica ecuatoriana

El tiempo es una construcción abstracta que abarca los anhelos más añorados del ser humano, y en sí, es el punto de partida para el desborde de su imaginación. De tal forma, se dio lugar a una brecha que rompió paradigmas al informar de una manera distinta a la convencional, es decir, el poder de provocar expresiones más allá de los sentidos, una manera en la que, sin contacto físico, la persona podría llegar a sentir el éxtasis en su máximo esplendor: el periodismo literario. Con esto, surge la necesidad de provocar sensaciones al transmitir información noticiosa, por lo que la humanidad investigará cada vez más acerca del hecho de interés, se enfocará no solo en el “qué” sino en el “para qué”, y es allí, que se entra en un paralelismo de géneros donde como afirma Vivaldi (1998) “Ni el periodismo es sólo mera objetividad, ni la Literatura es puro subjetivismo. El gran periodismo es algo más que simple comunicación; la auténtica Literatura no puede conformarse con los escarceos subjetivistas” (p.249). Esta dualidad da lugar a una imbricación de géneros llamada Periodismo Literario, que, a su vez, se desglosa en varias teorías de segmentación, en las cuales, cada una posee una clasificación de subgéneros, donde aunque definiremos los que se encuentran dentro de la rama periodística, nos enfocaremos en el género primordial para el análisis, es decir, la crónica periodística, donde se resalta la palabra periodística para no confundirla con la crónica en la rama netamente literaria. Por otro lado, es relevante destacar que las ideas que dieron inicio a la investigación, fueron abordadas por dos autores que metaforizaron al género. Villoro (2007), quien menciona que el Periodismo Literario es como el “ornitorrinco de la prosa” por los rasgos ajenos que lo comprenden y Susana Rotker (2007), que destaca la idea de que el Periodismo Literario es un género híbrido y contradictorio, tal cual “centauro” debido a su dualidad única (Benavides, 2016, p.1-2). De tal forma, en el primer capítulo, se hablará acerca del origen histórico a través de antecedentes que contextualizan tanto el surgimiento de la literatura, como del periodismo y así, el periodismo literario a nivel mundial y nacional, con principal enfoque en la crónica periodística y la convergencia que ésta conlleva, tal cual señala Pérez (2010) “El periodismo es la historia del presente y la literatura es el periodismo del pasado”. Posterior, tras conocer el contexto histórico en el primer capítulo; en el segundo, se establecerá el enfoque de la disertación, la cual pretende centrarse primero, en la conceptualización de términos que abarcan la investigación en torno tanto de periodismo como de literatura, luego, en la imbricación de ambos, los géneros que comprende dicha convergencia, el subgénero a analizar: la crónica, y así, los elementos narratológicos de gran utilidad para el análisis del universo de estudio: Premio CIESPAL de crónica 2014, escogido debido a que el anfitrión del concurso, el Centro Internacional de Estudios Superiores de Periodismo para América Latina (CIESPAL), ha tenido una gran trascendencia en el ámbito periodístico, donde no solo se le ha reconocido a nivel nacional e internacional sino que también, ha realizado investigaciones de gran relevancia para la rama periodística, además de Seminarios latinoamericanos enfocados a la comunicación y el periodismo, así como proyectos, análisis de medios, creación de textos, entre otros temas que abarca y en los cuales tiene gran expertiz, siendo un referente del género para tomarlo como universo de estudio (CIESPAL, 2017). De esa manera, se da apertura al último capítulo, el análisis descriptivointerpretativo; para que en torno a la investigación del primer capítulo acerca de los antecedentes históricos enfocados a la crónica, y del segundo con el desglose de conceptos, elementos narratológicos, construcción de la crónica, etc., se analice en el objeto de estudio, las tres crónicas ganadoras del concurso CIESPAL bajo la metodología del análisis crítico-interpretativo, como el teórico metodológico, en el cual prevalecerán dos tipos de técnicas: la descriptiva, y la interpretativa, con el fin de no solo demostrar la presencia del Periodismo Literario en la crónica ecuatoriana, sino de las características que reflejan dicha simbiosis de géneros en el universo de estudio

Knee and hip agonist-antagonist relationship in male under-19 soccer players

The purpose of this study was to evaluate the strength of the knee flexors and extensors and hip abductor and adductor muscles in young soccer players. Twenty-three male under-19 soccer players participated in this study (age: 17.7 ± 0.2 years; height: 173.0 ± 1.1 cm; body mass: 66.1 ± 1.3 kg). Body composition was measured using a bioelectrical impedance (InBody770), and the dynamometry was performed by an isokinetic dynamometer (Biodex System 3) for knee flexion and extension, and by an isometric dynamometer (Smart Groin Trainer), for hip adduction and abduction. Comparisons were made between dominant members (D) vs. non-dominant members (ND) and adductors vs. abductors (ADD:ABD) using the Wilcoxon test. There were statistically significant differences in the peak torques between the dominant and non-dominant members in the flexion function (Z = -4.198, p < 0.01) and in the extension function (Z = -4.197, p < 0.01) of the knee in concentric muscular action, and the flexion (Z = -4.198, p < 0.01) and in the extension (Z = -4.198, p < 0.01) of the knee in eccentric muscular action. No statistically significant differences were obtained in the conventional ratio (Z = -0.456, p = 0.648) nor the functional ratio (Z = -0.335, p = 0.738) between D and ND members. There were no statistically significant differences between adductors and abductors at the moment of strength for absolute values (N). The reference absolute and normalized to the weight values and the ADD:ABD can be used as a guideline for classifying players in screening and comparison in return tests to sports practice after an injury

Education guide: gender and citizenship: 3rd cycle

Aimed at the formal education and, in particular, the cross-curricular area of Education and Citizenship, these Guides constitute a support tool for teachers in all curricula subjects within all levels and types of formal education. The main purpose of the Education Guides. Gender and Citizenship is to mainstream gender perspective in formal educational practices and organizational dynamics within educational establishments attempting to uproot gradually stereotypes based on gender. These stereotypes predefine what a boy is expected to do as well as what a girl is expected to do. Therefore, the Guides were designed to contribute to an effective education for citizenship for girls and boys. The aim is to make boys and girls genuinely and freely choose their academic, professional and life projects.info:eu-repo/semantics/publishedVersio

Guião de educação género e cidadania: 3º ciclo do ensino básico

Destinando-se à educação formal, os Guiões são instrumentos de apoio para profissionais de educação de todas as áreas curriculares, disciplinares e não disciplinares, e de todos os tipos e/ou modalidades de ensino. A finalidade destes Guiões é a integração da dimensão de género nas práticas educativas formais e nas dinâmicas organizacionais das instituições educativas, com vista à eliminação gradual dos estereótipos sociais de género que predefinem o que é suposto ser e fazer um rapaz e uma rapariga. Pretende-se, assim, contribuir para tornar efetiva a educação para a cidadania para raparigas e para rapazes, garantindo que a educação, e a cidadania como uma das suas áreas transversais, se configure e estruture a partir, entre outros, do eixo das relações sociais de género, visando uma verdadeira liberdade de escolha dos percursos académicos e profissionais e dos projetos de vida por parte, quer de raparigas, quer de rapazes. (Excerto da nota prévia da obra)info:eu-repo/semantics/publishedVersio