CIBERER : Spanish national network for research on rare diseases: A highly productive collaborative initiative

Altres ajuts: Instituto de Salud Carlos III (ISCIII); Ministerio de Ciencia e Innovación.CIBER (Center for Biomedical Network Research; Centro de Investigación Biomédica En Red) is a public national consortium created in 2006 under the umbrella of the Spanish National Institute of Health Carlos III (ISCIII). This innovative research structure comprises 11 different specific areas dedicated to the main public health priorities in the National Health System. CIBERER, the thematic area of CIBER focused on rare diseases (RDs) currently consists of 75 research groups belonging to universities, research centers, and hospitals of the entire country. CIBERER's mission is to be a center prioritizing and favoring collaboration and cooperation between biomedical and clinical research groups, with special emphasis on the aspects of genetic, molecular, biochemical, and cellular research of RDs. This research is the basis for providing new tools for the diagnosis and therapy of low-prevalence diseases, in line with the International Rare Diseases Research Consortium (IRDiRC) objectives, thus favoring translational research between the scientific environment of the laboratory and the clinical setting of health centers. In this article, we intend to review CIBERER's 15-year journey and summarize the main results obtained in terms of internationalization, scientific production, contributions toward the discovery of new therapies and novel genes associated to diseases, cooperation with patients' associations and many other topics related to RD research

Visiones de fin de siglo

La presente publicación concentra los trabajos presentados por investigadores nacionales y extranjeros en el "Il Encuentro Internacional de Historia. El siglo XX en Bolivia y América Latina. Visiones de fin de siglo", que se realizó en la ciudad de Cochabamba entre el 27 y el 31 de julio de 1998. El encuentro fue organizado por la "Coordinadora de Historia. Investigadores Asociados" y contó con el auspicio del Centro Cultural Portales con sede en esa ciudad, así como con el apoyo de las siguientes instituciones: Facultad de Humanidades de la Universidad Mayor de San Andrés de La Paz, Plural Editores, Anden Silver Corporation, Embajada de México, Lloyl Aéreo Boliviano, Compañía Industrial de Tabacos S.A., Banco Mercantil y La Estrella. La Coordinadora de Historia, que reúne a más de 20 historiadores/as bolivianos/as, desarrolló en 1994 un encuentro similar sobre el siglo XIX en la ciudad de Sucre. Las actas del mismo, al que asistieron renombrados historiadores de Europa, Estados Unidos, Latinoamérica y Bolivia, ya han sido publicadas. En esta oportunidad, 48 expositores abordaron las siguientes temáticas planteadas por los organizadores del Congreso: - Archivos documentales bolivianos del siglo XX. - Proyectos y modelos de sociedad en Bolivia. - Estructuras y practicas políticas en Bolivia y America Latina. - Proyectos, estructuras y modelos económicos en Bolivia y América Latina. - Movimientos, actores y estructuras sociales en Bolivia y America Latina. - Culturas hegemónicas y contraculturas en Bolivia y America Latina. Diez de ellos, Horacio Cerruti, Francisco Zapata, Antonio García de Léon, Antonio Mitre, Melvin Burke, H.C.F, Mansilla, Janvier Sanjinés, Jorge Lazarte, René Antonio Mayorga y Gonzalo Sánchez de Lozada, estuvieron encargados de desarrollar "ponencias magistrales", las que se caracterizaron por intentar visiones más globales o de síntesis sobre las temáticas generales trabajadas en cada una de las jornadas. El encuentro sobre el siglo XX, tuvo la particularidad de reunir a especialistas nacionales extranjeros de distintas disciplinas de las ciencias sociales y humanas como historiadores, sociólogos, antropólogos, economistas y literatos, con el objetivo de lograr el intercambio de visiones y perspectivas de análisis bajo una óptica multirdisciplinaria. Ello permitió romper barreras entre las disciplinas que muchas veces son resultado de prejuicos y celos y desarrollar un rico y creativo débale que muy pocas yeces se realiza en nuestro medio

Anchuelo. Propuestas bioclimáticas en el espacio público

Anchuelo. Propuestas bioclimáticas en el espacio público. Publicación digital de los trabajos elaborados por los estudiantes del curso 2021/22 de la asignatura La Ciudad y el Medio de la Escuela Técnica Superior de Arquitectura de Madrid de la Universidad Politécnica de Madrid. Muestra una serie de propuestas elaboradas en la asignatura para mejorar bioclimáticamente diferentes espacios públicos municipales en el marco del acuerdo realizado entre el Departamento de Urbanística y Ordenación del Territorio y el Excmo. Ayuntamiento de Anchuelo (Madrid)

Round robin performance testing of organic photovoltaic devices

This study addresses the issue of poor intercomparability of measurements of organic photovoltaic (OPV) devices among different laboratories. We present a round robin performance testing of novel OPV devices among 16 laboratories, organized within the framework of European Research Infrastructure Project (SOPHIA) and European Energy Research Alliance (EERA). Three types of OPVs with different structures, dimensions and encapsulations are studied and compared with reference Si solar cells certified by accredited laboratories. The agreement of the measurements of these among different laboratories is analyzed by focusing on testing procedures, testing equipment and sample designs. A number of deviations and pitfalls are revealed and based on the analyses, a set of recommendations are suggested for improving the agreement among the measurements of such OPV technologies.European Commission's FP7 programme; European Energy Research Alliance (EERA); EUDP; UK Department for Business, Innovation and Skill

Geoeconomic variations in epidemiology, ventilation management, and outcomes in invasively ventilated intensive care unit patients without acute respiratory distress syndrome: a pooled analysis of four observational studies

Background: Geoeconomic variations in epidemiology, the practice of ventilation, and outcome in invasively ventilated intensive care unit (ICU) patients without acute respiratory distress syndrome (ARDS) remain unexplored. In this analysis we aim to address these gaps using individual patient data of four large observational studies. Methods: In this pooled analysis we harmonised individual patient data from the ERICC, LUNG SAFE, PRoVENT, and PRoVENT-iMiC prospective observational studies, which were conducted from June, 2011, to December, 2018, in 534 ICUs in 54 countries. We used the 2016 World Bank classification to define two geoeconomic regions: middle-income countries (MICs) and high-income countries (HICs). ARDS was defined according to the Berlin criteria. Descriptive statistics were used to compare patients in MICs versus HICs. The primary outcome was the use of low tidal volume ventilation (LTVV) for the first 3 days of mechanical ventilation. Secondary outcomes were key ventilation parameters (tidal volume size, positive end-expiratory pressure, fraction of inspired oxygen, peak pressure, plateau pressure, driving pressure, and respiratory rate), patient characteristics, the risk for and actual development of acute respiratory distress syndrome after the first day of ventilation, duration of ventilation, ICU length of stay, and ICU mortality. Findings: Of the 7608 patients included in the original studies, this analysis included 3852 patients without ARDS, of whom 2345 were from MICs and 1507 were from HICs. Patients in MICs were younger, shorter and with a slightly lower body-mass index, more often had diabetes and active cancer, but less often chronic obstructive pulmonary disease and heart failure than patients from HICs. Sequential organ failure assessment scores were similar in MICs and HICs. Use of LTVV in MICs and HICs was comparable (42·4% vs 44·2%; absolute difference -1·69 [-9·58 to 6·11] p=0·67; data available in 3174 [82%] of 3852 patients). The median applied positive end expiratory pressure was lower in MICs than in HICs (5 [IQR 5-8] vs 6 [5-8] cm H2O; p=0·0011). ICU mortality was higher in MICs than in HICs (30·5% vs 19·9%; p=0·0004; adjusted effect 16·41% [95% CI 9·52-23·52]; p<0·0001) and was inversely associated with gross domestic product (adjusted odds ratio for a US$10 000 increase per capita 0·80 [95% CI 0·75-0·86]; p<0·0001). Interpretation: Despite similar disease severity and ventilation management, ICU mortality in patients without ARDS is higher in MICs than in HICs, with a strong association with country-level economic status

Outcome of acute hypoxaemic respiratory failure: insights from the LUNG SAFE Study

Background: Current incidence and outcome of patients with acute hypoxaemic respiratory failure requiring mechanical ventilation in the intensive care unit (ICU) are unknown, especially for patients not meeting criteria for acute respiratory distress syndrome (ARDS). Methods: An international, multicentre, prospective cohort study of patients presenting with hypoxaemia early in the course of mechanical ventilation, conducted during four consecutive weeks in the winter of 2014 in 459 ICUs from 50 countries (LUNG SAFE). Patients were enrolled with arterial oxygen tension/inspiratory oxygen fraction ratio ≤300 mmHg, new pulmonary infiltrates and need for mechanical ventilation with a positive end-expiratory pressure of ≥5 cmH2O. ICU prevalence, causes of hypoxaemia, hospital survival and factors associated with hospital mortality were measured. Patients with unilateral versus bilateral opacities were compared. Findings: 12 906 critically ill patients received mechanical ventilation and 34.9% with hypoxaemia and new infiltrates were enrolled, separated into ARDS (69.0%), unilateral infiltrate (22.7%) and congestive heart failure (CHF; 8.2%). The global hospital mortality was 38.6%. CHF patients had a mortality comparable to ARDS (44.1% versus 40.4%). Patients with unilateral-infiltrate had lower unadjusted mortality, but similar adjusted mortality compared to those with ARDS. The number of quadrants on chest imaging was associated with an increased risk of death. There was no difference in mortality comparing patients with unilateral-infiltrate and ARDS with only two quadrants involved. Interpretation: More than one-third of patients receiving mechanical ventilation have hypoxaemia and new infiltrates with a hospital mortality of 38.6%. Survival is dependent on the degree of pulmonary involvement whether or not ARDS criteria are reached