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  • Publication
    Guía para el diseño y especificación de la instalación de transmisión, comunicaciones y sistemas asociados en inmuebles destinados a alojar hospitales universitarios que, desarrollan actividad de asistencia docencia e investigación
    (Red Académica y de Investigación Española (RedIRIS), 2023) Álvarez Fernández, Javier; Álvarez Canales, David
    La Instalación de Transmisión y Comunicaciones (en adelante ITC) ha evolucionado de ser una instalación con poca relevancia en el ámbito de la especificación del proyecto de ejecución nueva o remodelación de inmuebles singulares de propietario único y uso exclusivo (mayoritariamente para alojar instituciones), a ser una instalación estratégica para el control y operación en modo automático, de las instalaciones asociadas al inmueble y de los procesos de negocio de la organización que aloja éste. Igual evolución, pero por razones distintas, ha tenido el control asociado a las instalaciones industriales que requiere el inmueble. Ha pasado de ser un anexo en la especificación de cada instalación, a ser de gran importancia, consecuencia de un nuevo paradigma, que en el ámbito de la ingeniería tiene su aproximación desde la gestión inteligente de cada instalación, soportado en el término “smart” (Smart buildings, Smart cities, Smart-phones, Smart-cards, etc.) y en el ámbito de la arquitectura tiene una aproximación más abstracta de gestión integral e integrada de los inmuebles, referida por el acrónimo I2B, (Integrated Intelligent Building). Consecuencia de esta nueva concepción y apoyándose exclusivamente en tecnología IP (tecnología con la que funciona Internet y que promueve la Unión Europea en sus programas de investigación competitiva) surgen de forma natural 2 intranets: Intranet del Inmueble para operación y control de las instalaciones asociadas al inmueble e Intranet del Negocio para operación y control de los procesos de negocio que aloja el inmueble.
  • Publication
    Co-creation Initiatives in Healthcare in Small Communities
    (Galvin Publishers, 2022-08) Ramos-Gonzalez, Maria Victoria; San Pedro-Botas, Iris de; Dochao, Andres; Caeiro, Anabela; D’Amico, Roberto; Duta, Greghory; Casado-Ramirez, Elvira; Santacruz, Esmeralda; Hernández, Coral; Alcoceda, Jose Antonio; Tena-Davila, Maria José de; Burgos Llamo, Alfredo; Pérez de la Cámara, Santiago; Marina-Boillos, Pablo; Pascual-Carrasco, Mario; Unión Europea. Comisión Europea. H2020
    The uses of technology in public spaces are not new, but now we find new forms of social interactions and practices, socio-spatial representations and relationships. The close relationship between real and virtual worlds also opens up new ways of advancing knowledge. In order to facilitate the implementation of Open Science, we explore different co-creation methods with multiple stakeholders. All groups are involved and have influence throughout the project lifecycle: from the beginning, to planning, to implementation, to dissemination. Research activities should involve a wide variety of stakeholders interested, including government, educators, nurses, charities, civil societies, patient groups and the publics, based in a way to (1) obtaining contributions by customers, (2) selecting the best of these contributions, and (3) incorporating these selected contributions into products, processes, or services. Interactions between Information and Communication Technologies (ICT), public spaces, and healthcare are considered as s a tool for connecting people in small communities (enhancing participation). A Platform (DXP - Digital eXperience Platform) through “headless” technologies may provide content management capabilities and easy integration with devices and various sources, driven by user needs and developed with the concept of “Community in mind” in order to create strong and active communities and transform our small communities into more human environments, rather than just more high-tech places, and to understand that “smartness” should be people-friendly. It was applies the Responsible Research and Innovation (RRI) principles on the scientific process and governance, identify drivers and barriers, interests and values for current and future societal challenges.
  • Publication
    Lecciones y retos tras dos años de pandemia. La opinión autorizada - Cristóbal Belda
    (Ministerio de Ciencia e Innovación (España), 2022) Belda-Iniesta, Cristobal; Fundación Española para la Ciencia y la Tecnología (FECYT)
    El informe “Lecciones y retos tras dos años de pandemia” analiza la respuesta de la sociedad española ante la enfermedad COVID-19 desde tres ámbitos: la investigación, las empresas y la ciudadanía en general. Recoge además las reflexiones de 19 expertos y expertas y 8 empresas que hacen balance de estos dos años de pandemia a través de sus vivencias personales. El director de Instituto de Salud Carlos III (ISCIII), Cristóbal Belda, relata el impulso del gobierno a los proyectos de investigación en COVID-19 a través de los fondos extraordinarios.
  • Publication
    Medio siglo de cribado neonatal en España: evolución de los aspectos éticos, legales y sociales (AELS). Parte III, aspectos sociales
    (Ministerio de Sanidad (España), 2021-01-26) Labrador Cañadas, Mª Vicenta; Pàmpols Ros, Teresa; Dulín Íñiguez, Elena; Pérez Aytés, Antonio; García Sagredo, José Miguel; Díaz de Bustamante, Aránzazu; Martin Arribas, Maria Concepcion; Garcia Lopez, Fernando Jose; Nicolás Jiménez, Pilar
    [ES] Las bases para la toma de decisiones acerca del desarrollo de los programas de cribado de Salud Pública no son exclusivamente médicas, sino también sociales. En esta parte III del artículo se contemplan los actores que intervienen en la gobernanza de los programas, cómo son las autoridades sanitarias, las sociedades científicas y profesionales, así como las familias y su movimiento asociativo. En primer lugar, se analiza el papel de las instituciones/autoridades sanitarias en el desarrollo de los programas y en la evolución del modelo para la toma de decisiones, hasta el actual basado en la evidencia, así como en la elaboración de una opinión experta, imparcial y transparente en política sanitaria y su coordinación en el marco del Sistema Nacional de Salud (SNS). Y, de acuerdo con dicha evidencia y con el consenso, las instituciones/autoridades sanitarias han tratado de conseguir un abordaje más homogéneo y conforme a criterios de calidad del programa de cribado neonatal en todo el territorio. A continuación, se aborda el papel de las sociedades científicas y profesionales, especialmente de la Sociedad Española de Química Clínica (actualmente Sociedad Española de Medicina de Laboratorio (SEQCML), a través de la Comisión de Errores Congénitos del Metabolismo, y de la Asociación Española de Cribado Neonatal (AECNE), que desde 1985 y durante 33 años recogieron los datos de actividad de los centros de cribado y establecieron un foro de debate, intercambio de conocimientos y colaboración entre ellos y con las autoridades sanitarias. De ellas, destaca el importante papel de la Asociación Española de Errores Congénitos del Metabolismo (AECOM) desde 1999 en el diagnóstico, seguimiento y tratamiento de los pacientes. Finalmente, se contempla el papel de las familias y los aspectos psicosociales del programa, así como la evolución del movimiento asociativo, con especial mención a la fundación en 1990 de la Federación Española de PKU y otros trastornos (FAEPKU) (que pasó después a llamarse la Federación Española de Enfermedades Metabólicas Hereditarias) y en 1999 de la Federación Española de Enfermedades Raras (FEDER). Estas asociaciones han contribuido notablemente al empoderamiento de los pacientes, a apoyar la investigación y la formación y a establecer una red de colaboración y soporte para los pacientes y sus familias. Y aunque están en contacto y colaboran con las autoridades sanitarias, hasta el momento no han participado en la elaboración de decisiones y en la gobernanza de los programas. El espíritu de superación y mejora ha marcado la evolución de los programas durante este medio siglo al incluir el desarrollo de sus aspectos éticos, legales y sociales. Se avecinan desafíos tecnológicos importantes y habrá que saber utilizarlos con eficiencia, proporcionalidad y justicia en el mejor interés del niño y, por extensión, de la familia y de la sociedad. [EN] Decision making for the development of newborn screening programs is based on not only medical but also social concerns and involves different stakeholders. Part III of the article focuses on their role in the governance of the programs. First of all, we consider the proactive role that health authorities has played in the evolution to an evidentiary model of policy development currently based on evidence, just as in the preparation of an expert, impartial and transparent opinion on health policy and its coordination with the national health system. And, in accordance with this evidence and with the consensus, health autorities following quality criteria have made an attempt to achieve a more homogeneous approach of the neonatal screening program throughout the territory. Secondly, we address the role of several scientific and professional societies in newborn screening. Among them, it deserves to be mentioned the Spanish Society for Clinical Chemistry, currently Spanish Society of Laboratory Medicine (SEQCML), and its Commission of inborn errors of metabolism and the Spanish Society for Newborn Screening (AECNE), which since 1985 and for thirty three years collected the activity of newborn screening centers and established a forum for debate, sharing of knowledge and cooperation among screening centers and with health authorities. Since 1999, the Spanish Society for Inborn Errors of Metabolism (AECOM) exercises an important activity in the field of diagnosis treatment and follow up of patients. Finally, we consider the role of families and the psychosocial aspects of the programme, and the associative activity of patient organizations. In 1990 the Spanish federation of PKU and other disorders (FAEPKU) was found, renamed currently as The Spanish Federation of Inherited Metabolic Diseases; together with the Spanish Federation for Rare Diseases (FEDER), found in 1999, they both have clearly contributed to the patient’s empowerment, supporting research and education and establishing a network of cooperation and support for patients and their families. Patient organizations collaborate with health authorities but they have not participated in policy decision making yet. During this half century, the evolution of newborn screening programs have been characterized for a spirit of improvement, by including the development of ethical, legal and social issues. Important technological challenges lie ahead and it will be necessary to know how to use them efficiently, proportionally and fairly in the best interest of newborns and by extension of their family and society.
  • Publication
    Physical Restraint Use in Intensive Care Units: Exploring the Decision-Making Process and New Proposals. A Multimethod Study.
    (Multidisciplinary Digital Publishing Institute (MDPI), 2021-11-11) Acevedo-Nuevo, María; González-Gil, María Teresa; Martin Arribas, Maria Concepcion; Hospital Universitario Puerta de Hierro de Majadahonda
    The general aim of this study was to explore the decision-making process followed by Intensive Care Unit (ICU) health professionals with respect to physical restraint (PR) administration and management, along with the factors that influence it. A qual-quant multimethod design was sequenced in two stages: an initial stage following a qualitative methodology; and second, quantitative with a predominant descriptive approach. The multicenter study was undertaken at 17 ICUs belonging to 11 public hospitals in the Madrid region (Spain) across the period 2015 through 2019. The qualitative stage was performed from an interpretative phenomenological perspective. A total of eight discussion groups (DG) were held, with the participation of 23 nurses, 12 patient care nursing assistants, and seven physicians. Intentional purposive sampling was carried out. DG were tape-recorded and transcribed. A thematic analysis of the latent content was performed. In the quantitative stage, we maintained a 96-h observation period at each ICU. Variables pertaining to general descriptive elements of each ICU, institutional pain-agitation/sedation-delirium (PAD) monitoring policies and elements linked to quality of PR use were recorded. A descriptive analysis was performed, and the relationship between the variables was analyzed. The level of significance was set at p ≤ 0.05. A total of 1070 patients were observed, amounting to a median prevalence of PR use of 19.11% (min: 0%-max: 44.44%). The differences observed between ICUs could be explained by a difference in restraint conceptualization. The various actors involved jointly build up a health care culture and a conceptualization of the terms "safety-risk", which determine decision-making about the use of restraints at each ICU. These shared meanings are the germ of beliefs, values, and rituals which, in this case, determine the greater or lesser use of restraints. There were different profiles of PR use among the units studied: preventive restraints versus "Zero" restraints. The differences corresponded to aspects such as: systematic use of tools for assessment of PAD; interpretation of patient behavior; the decision-making process, the significance attributed to patient safety and restraints; and the feelings generated by PR use. The restraint-free model requires an approach to safety from a holistic perspective, with the involvement of all team members and the family.
  • Publication
    Comunicación científica e innovación tecnológica en la primera Cruz Roja, 1863-1876
    (Casa de Oswaldo Cruz (COC), 2016) García-Reyes, Juan Carlos; Arrizabalaga, Jon; Agencia Estatal de Investigación (España)
    [ES] Los primeros años del movimiento internacional de Cruz Roja coincidieron con grandes cambios tecnológicos en la medicina de guerra. Las peculiaridades organizativas de la Asociación Internacional de Socorro a los Soldados Heridos en Campaña, impulsada por el Comité de Ginebra y los comités nacionales de Cruz Roja; la confluencia en diversos congresos profesionales y publicaciones de médicos de las diferentes sociedades nacionales de esta asociación; y la construcción de un conocimiento práctico compartido, puesto a prueba en la Guerra Franco-Prusiana (1870-1871), proporcionan claves para comprender las innovaciones tecnológicas introducidas por la Cruz Roja Española durante la tercera y última Guerra Carlista (1872-1876). [EN] The early years of the international Red Cross movement coincided with great technological changes in war medicine. The organizational peculiarities of the International Association for Relief of Wounded Soldiers in Campaign, set up by the Geneva Committee, and by the Red-Cross' national committees; the convergence in various professional conferences and publications of doctors from different national societies of this association; and the construction of a body of shared practical expertise tested during the Franco-Prussian War (1870-1871) provide keys for understanding the technological innovations introduced by the Spanish Red Cross during the third and last Carlist War (1872-1876).
  • Publication
    Medial Temporal Lobe Involvement in Human Prion Diseases: Implications for the Study of Focal Non Prion Neurodegenerative Pathology.
    (Multidisciplinary Digital Publishing Institute (MDPI), 2021-03-10) Rábano, Alberto; Guerrero Márquez, Carmen; Juste, Ramón A; Geijo, María V; Calero, Miguel
    Human prion and non-prion neurodegenerative diseases share pathogenic mechanisms and neuropathological features. The lesion profile of a particular entity results from specific involvement of vulnerable neuron populations and connectivity circuits by a pathogenic protein isoform with strain-like properties. The lesion profile of the medial temporal lobe (MTL) was studied in postmortem tissue of 143 patients with human prion disease (HPD) including sporadic, genetic, and acquired forms. Most cases (90%) were classified according to PrPres type and/or PRNP codon 129 status, in addition to a full neuropathological profile. Mixed histotypes represented 29.4% of total sporadic Creutzfeldt-Jakob disease (sCJD) cases. An intensity score of involvement including spongiosis and astrogliosis was determined for the amygdala, presubiculum, subiculum, entorhinal cortex, CA1 to CA4 sectors of the hippocampal cortex, and dentate gyrus. Connectivity hubs within the MTL presented the highest scores. Diverse lesion profiles were obtained for different types and subtypes of HPD. Impact of mixed PrPres types on the MTL lesion profile was higher for sCJDMV2K cases than in other histotypes. Differences between MTL profiles was globally consistent with current evidence on specific strains in HPD. These results may be relevant for the analysis of possible strain effects in focal non-prion neurodegenerative conditions limited to the MTL.
  • Publication
    Long runs of homozygosity are associated with Alzheimer's disease.
    (Springer, 2021-02-24) Moreno-Grau, Sonia; Fernández, Maria Victoria; de Rojas, Itziar; Garcia-González, Pablo; Hernández, Isabel; Farias, Fabiana; Budde, John P; Quintela, Inés; Madrid, Laura; González-Pérez, Antonio; Montrreal, Laura; Alarcón-Martín, Emilio; Alegret, Montserrat; Maroñas, Olalla; Pineda, Juan Antonio; Macías, Juan; Marquié, Marta; Valero, Sergi; Benaque, Alba; Clarimón, Jordi; Bullido, Maria Jesus; García-Ribas, Guillermo; Pástor, Pau; Sánchez-Juan, Pascual; Álvarez, Victoria; Piñol-Ripoll, Gerard; García-Alberca, Jose María; Royo, José Luis; Franco-Macías, Emilio; Mir, Pablo; Calero, Miguel; Medina, Miguel; Rábano, Alberto; Ávila, Jesús; Antúnez, Carmen; Real, Luis Miguel; Orellana, Adelina; Carracedo, Ángel; Sáez, María Eugenia; Tárraga, Lluís; Boada, Mercè; Cruchaga, Carlos; Ruiz, Agustín; National Institutes of Health (Estados Unidos); Alzheimer's Association; Fundación La Caixa; Instituto de Salud Carlos III; Unión Europea. Fondo Europeo de Desarrollo Regional (FEDER/ERDF); Ministerio de Sanidad (España); Alzheimer’s Disease Neuroimaging Initiative; NIH - National Institute on Aging (NIA) (Estados Unidos); NIH - National Institute of Biomedical Imaging and Bioengineering (NIBIB) (Estados Unidos)
    Long runs of homozygosity (ROH) are contiguous stretches of homozygous genotypes, which are a footprint of inbreeding and recessive inheritance. The presence of recessive loci is suggested for Alzheimer's disease (AD); however, their search has been poorly assessed to date. To investigate homozygosity in AD, here we performed a fine-scale ROH analysis using 10 independent cohorts of European ancestry (11,919 AD cases and 9181 controls.) We detected an increase of homozygosity in AD cases compared to controls [βAVROH (CI 95%) = 0.070 (0.037-0.104); P = 3.91 × 10-5; βFROH (CI95%) = 0.043 (0.009-0.076); P = 0.013]. ROHs increasing the risk of AD (OR > 1) were significantly overrepresented compared to ROHs increasing protection (p < 2.20 × 10-16). A significant ROH association with AD risk was detected upstream the HS3ST1 locus (chr4:11,189,482‒11,305,456), (β (CI 95%) = 1.09 (0.48 ‒ 1.48), p value = 9.03 × 10-4), previously related to AD. Next, to search for recessive candidate variants in ROHs, we constructed a homozygosity map of inbred AD cases extracted from an outbred population and explored ROH regions in whole-exome sequencing data (N = 1449). We detected a candidate marker, rs117458494, mapped in the SPON1 locus, which has been previously associated with amyloid metabolism. Here, we provide a research framework to look for recessive variants in AD using outbred populations. Our results showed that AD cases have enriched homozygosity, suggesting that recessive effects may explain a proportion of AD heritability.
  • Publication
    Evaluación de la arquitectura hospitalaria: unidad de neonatología
    (Consejo Superior de Investigaciones Científicas (CSIC), 2020) Cambra-Rufino, Laura; Bedoya-Frutos, César; Paniagua-Caparros, Jose Leon; Ministerio de Educación, Cultura y Deporte (España)
    [ES]La búsqueda de la eficiencia y la calidad es especialmente relevante en la arquitectura sanitaria ya que su diseño tiene una repercusión directa en los resultados clínicos obtenidos. Dentro del hospital, la unidad de neonatología es el lugar donde se atiende a los pacientes más vulnerables al entorno que les rodea. Este estudio evalúa el diseño de dos unidades españolas en relación con las guías de diseño nacionales y las recomendaciones del proceso de diseño basado en evidencias a partir del análisis de sus plantas, fotografías y la herramienta de evaluación post-ocupacional CURARQ-UNeo. Los resultados identifican las posibles actuaciones de mejora para cada unidad. Este tipo de evaluación puede impulsar el avance del proceso de diseño basado en evidencias en España con la finalidad de que las decisiones del proyecto contribuyan a mejorar la calidad de vida de los neonatos, sus familiares y el personal de una unidad de neonatología. [EN] The pursuit of efficiency and quality is particularly relevant in healthcare architecture because its design has a direct impact on clinical outcomes. Within a hospital, the neonatal unit is the place where patients are most vulnerable to their surrounding environment. This study evaluates the design of two Spanish neonatal units using architectural layout analysis, photo analysis and the post-occupancy-evaluation tool CURARQ-UNeo, and compares these against national guidelines and principles based on the evidence-based design process. The results from these studies are used to identify areas for improvement in each unit. This kind of evaluation might enhance the progress of the evidence-based design process in Spain, with the aim of guiding project decisions that contribute towards improving the quality of life of neonates, their relatives and the staff in the neonatal unit.
  • Publication
    Two Pandemics, Two Surveys in the United States and in Spain.
    (American Public Health Association (APHA), 2021-03) Hernán, Miguel A; Yotti-Alvarez, Raquel
  • Publication
    Persistent Pulmonary Hypertension in Corrected Valvular Heart Disease: Hemodynamic Insights and Long-Term Survival.
    (Wiley, 2021-01-19) Bermejo, Javier; González-Mansilla, Ana; Mombiela, Teresa; Fernández, Ana I; Martínez-Legazpi, Pablo; Yotti-Alvarez, Raquel; García-Orta, Rocío; Sánchez-Fernández, Pedro L; Castaño, Mario; Segovia-Cubero, Javier; Escribano-Subias, Pilar; Alberto San Román, J; Borrás, Xavier; Alonso-Gómez, Angel; Botas, Javier; Crespo-Leiro, María G; Velasco, Sonia; Bayes-Genis, Antoni; López, Amador; Muñoz-Aguilera, Roberto; Jiménez-Navarro, Manuel; Gonzalez-Juanatey, Jose R; Evangelista, Arturo; Elizaga, Jaime; Martín-Moreiras, Javier; González-Santos, José M; Moreno-Escobar, Eduardo; Fernández-Avilés, Francisco; Instituto de Salud Carlos III; Ministerio de Ciencia e Innovación (España); Unión Europea. Fondo Europeo de Desarrollo Regional (FEDER/ERDF); Centro de Investigación Biomedica en Red - CIBER
    Background The determinants and consequences of pulmonary hypertension after successfully corrected valvular heart disease remain poorly understood. We aim to clarify the hemodynamic bases and risk factors for mortality in patients with this condition. Methods and Results We analyzed long-term follow-up data of 222 patients with pulmonary hypertension and valvular heart disease successfully corrected at least 1 year before enrollment who had undergone comprehensive hemodynamic and imaging characterization as per the SIOVAC (Sildenafil for Improving Outcomes After Valvular Correction) clinical trial. Median (interquartile range) mean pulmonary pressure was 37 mm Hg (32-44 mm Hg) and pulmonary artery wedge pressure was 23 mm Hg (18-26 mm Hg). Most patients were classified either as having combined precapillary and postcapillary or isolated postcapillary pulmonary hypertension. After a median follow-up of 4.5 years, 91 deaths accounted for 4.21 higher-than-expected mortality in the age-matched population. Risk factors for mortality were male sex, older age, diabetes mellitus, World Health Organization functional class III and higher pulmonary vascular resistance-either measured by catheterization or approximated from ultrasound data. Higher pulmonary vascular resistance was related to diabetes mellitus and smaller residual aortic and mitral valve areas. In turn, the latter correlated with prosthetic nominal size. Six-month changes in the composite clinical score and in the 6-minute walk test distance were related to survival. Conclusions Persistent valvular heart disease-pulmonary hypertension is an ominous disease that is almost universally associated with elevated pulmonary artery wedge pressure. Pulmonary vascular resistance is a major determinant of mortality in this condition and is related to diabetes mellitus and the residual effective area of the corrected valve. These findings have important implications for individualizing valve correction procedures. Registration URL: https://www.clinicaltrials.gov; Unique identifier: NCT00862043.
  • Publication
    Medio Siglo de Cribado Neonatal en España: Evolución de los Aspectos Éticos, Legales y Sociales (Aels). Parte I, Aspectos Éticos
    (Ministerio de Sanidad (España), 2021-01-26) Labrador Cañadas, Mª Vicenta; Pàmpols Ros, Teresa; Dulín Íñiguez, Elena; Pérez Aytés, Antonio; García Sagredo, José Miguel; Díaz de Bustamante, Aránzazu; Martin Arribas, Maria Concepcion; Garcia Lopez, Fernando Jose; Nicolás Jiménez, Pilar
    Decision making for the development of newborn screening programs is based on not only medical but also social concerns and involves different stakeholders. Part III of the article focuses on their role in the governance of the programs. First of all, we consider the proactive role that health authorities has played in the evolution to an evidentiary model of policy development currently based on evidence, just as in the preparation of an expert, impartial and transparent opinion on health policy and its coordination with the national health system. And, in accordance with this evidence and with the consensus, health autorities following quality criteria have made an attempt to achieve a more homogeneous approach of the neonatal screening program throughout the territory. Secondly, we address the role of several scientific and professional societies in newborn screening. Among them, it deserves to be mentioned the Spanish Society for Clinical Chemistry, currently Spanish Society of Laboratory Medicine (SEQCML), and its Commission of inborn errors of metabolism and the Spanish Society for Newborn Screening (AECNE), which since 1985 and for thirty three years collected the activity of newborn screening centers and established a forum for debate, sharing of knowledge and cooperation among screening centers and with health authorities. Since 1999, the Spanish Society for Inborn Errors of Metabolism (AECOM) exercises an important activity in the field of diagnosis treatment and follow up of patients. Finally, we consider the role of families and the psychosocial aspects of the programme, and the associative activity of patient organizations. In 1990 the Spanish federation of PKU and other disorders (FAEPKU) was found, renamed currently as The Spanish Federation of Inherited Metabolic Diseases; together with the Spanish Federation for Rare Diseases (FEDER), found in 1999, they both have clearly contributed to the patient's empowerment, supporting research and education and establishing a network of cooperation and support for patients and their families. Patient organizations collaborate with health authorities but they have not participated in policy decision making yet. During this half century, the evolution of newborn screening programs have been characterized for a spirit of improvement, by including the development of ethical, legal and social issues. Important technological challenges lie ahead and it will be necessary to know how to use them efficiently, proportionally and fairly in the best interest of newborns and by extension of their family and society.
  • Publication
    Potential Therapeutic Effects of the Neural Stem Cell-Targeting Antibody Nilo1 in Patient-Derived Glioblastoma Stem Cells
    (Frontiers Media, 2020-08-14) Rackov, Gorjana; Iegiani, Giorgia; Uribe, Daniel; Quezada, Claudia; Belda-Iniesta, Cristobal; Escobedo-Lucea, Carmen; Silva, Augusto; Puig, Pere; González-Rumayor, Víctor; Ayuso-Sacido, Ángel; Ministerio de Economía, Industria y Competitividad (España); Instituto de Salud Carlos III
    Glioblastoma (GBM) is the most devastating and least treatable brain tumor with median survival <15 months and extremely high recurrence rates. Promising results of immune checkpoint blockade obtained from pre-clinical studies in mice did not translate to clinic, and new strategies are urgently needed, particularly those targeting GBM stem cells (GSCs) that are held responsible for drug resistance and tumor recurrence. Patient-derived GSC cultures are critical for finding effective brain tumor therapies. Here, we investigated the ability of the recently described monoclonal antibody Nilo1 to specifically recognize GSCs isolated from GBM surgical samples. We employed five patient-derived GSC cultures with different stemness marker expression and differentiation potential, able to recapitulate original tumors when xenotransplanted in vivo. To answer whether Nilo1 has any functional effects in patient-derived GSCs lines, we treated the cells with Nilo1 in vitro and analyzed cell proliferation, cell cycle, apoptosis, sphere formation, as well as the expression of stem vs. differentiation markers. All tested GSCs stained positively for Nilo1, and the ability of Nilo1 to recognize GSCs strongly relied on their stem-like phenotype. Our results showed that a subset of patient-derived GSCs were sensitive to Nilo1 treatment. In three GSC lines Nilo1 triggered differentiation accompanied by the induction of p21. Most strikingly, in one GSC line Nilo1 completely abrogated self-renewal and led to Bax-associated apoptosis. Our data suggest that Nilo1 targets a molecule functionally relevant for stemness maintenance and pinpoint Nilo1 as a novel antibody-based therapeutical strategy to be used either alone or in combination with cytotoxic drugs for GSC targeting. Further pre-clinical studies are needed to validate the effectiveness of GSC-specific Nilo1 targeting in vivo.
  • Publication
    Spanish National Hip Fracture Registry (RNFC): First-year results and comparison with other registries and prospective multi-centric studies from Spain
    (Ministerio de Sanidad y Consumo (España), 2019-10-18) Sáez-López, Pilar; Ojeda-Thies, Cristina; Alarcón, Teresa; Muñoz Pascual, Angélica; Mora-Fernández, Jesús; González de Villaumbrosia, Cristina; Molina Hernández, María Jesús; Montero-Fernández, Nuria; Cancio Trujillo, José Manuel; Díez Pérez, Adolfo; Prieto Alhambra, Daniel; Caeiro Rey, José Ramón; Etxebarria Foronda, Íñigo; Gómez Campelo, Paloma; Pareja Sierra, Teresa; Tarazona-Santabalbina, Francisco José; López-Giménez, Rosario; Otero Puime, Ángel; Navarro-Castellanos, Laura; Queipo Matas, Rocío; Jiménez Mola, Sonia; Lopez-Peña, Tomas; Cassinello Ogea, Concepción; González-Montalvo, Juan I; RNFC; Amgen; UCB Pharma; Abbott; FAES Farma; Fundación Mutua Madrileña
    [EN] Background: The Spanish National Hip Fracture Registry (Registro Nacional de Fracturas de Cadera or RNFC) is a Spanish, prospective, multi-centric registry, commenced in 2017. The goal of this paper is to present the data from the first annual report and to compare them with autonomic registries and recent prospective multi-centric studies performed in Spain. Methods: We included persons 75 years of age or older treated for fragility hip fractures in any of the centers participating in the RNFC between January and October 2017. The descriptive statistics of each variable used the mean (and standard deviation) or the median (and interquartile ranges) for the ordinal variables and the percentage for the categoric variables. A descriptive analysis of the casemix was performed and compared with available data from the aforementioned studies. Results: The RNFC included 7.208 patients from 54 hospitals, with a mean age of 86.7 (SD 5.6) years; 75.4% were women, and 36.4% showed cognitive decline. Mean surgical delay was 75.7 (SD 63.6) hours, and length of stay averaged 10.9 (SD 6.7) days. Of the patients who lived at home (75.4%), less than half (37.0%) returned home at discharge. One-month mortality was 7.1%. Comparison with other studies showed important differences, especially regarding patients newly sent to nursing homes (7.7-29.4%) and with antiosteoporotic treatment at discharge (14.5-36.7%). Conclusions: The RNFC is the largest prospective database to date that offers data regarding the characteristics of patients hospitalized for hip fractures in Spain. Comparison with recent studies showed some important differences. [ES] Fundamentos: El Registro Nacional de Fracturas de Cadera (RNFC) es un registro español multicéntrico, prospectivo y continuo, que comenzó en 2017. El objetivo de este artículo fue presentar los datos del primer informe anual y compararlos con los registros autonómicos y los estudios multicéntricos realizados recientemente en España. Métodos: Se incluyeron las personas de 75 años o más atendidas con el diagnóstico de fractura de cadera por fragilidad en alguno de los hospitales participantes en el RNFC, entre enero y octubre de 2017. En el análisis estadístico se utilizó la media y desviación estándar o mediana y rangos intercuartílicos para las variables numéricas y los porcentajes para las variables categóricas. Se realizó un análisis descriptivo global de la casuística y se comparó con los datos disponibles de los estudios previos mencionados. Resultados: Se registraron 7.208 personas de 54 hospitales, con una edad media de 86,7 años (DE 5,6). El 75,4% fueron mujeres y el 36,4% presentaron deterioro cognitivo previo. La demora quirúrgica media fue de 75,7 horas (DE 63,6) y la estancia media fue de 10,9 días (DE 6,7). De las personas que vivían en un domicilio antes de la fractura (75,4%), menos de la mitad (37,0%) volvieron a él tras el alta hospitalaria. Al mes, había fallecido el 7,1%. La comparación con los otros estudios mostró algunas diferencias importantes, sobre todo en la ubicación previa, en el porcentaje de pacientes institucionalizados de novo (7,7-29,4%) y en el porcentaje con tratamiento antiosteoporótico al alta (14,5-36,7%). Conclusiones: El RNFC es la mayor base de datos prospectiva que aporta datos sobre el perfil de los pacientes hospitalizados por fractura de cadera en España. La comparación con otros estudios recientes muestra algunas diferencias importantes.
  • Publication
    Critical knowledge gaps and research needs related to the environmental dimensions of antibiotic resistance
    (Elsevier, 2018) Larsson, D G Joakim; Andremont, Antoine; Bengtsson-Palme, Johan; Brandt, Kristian Koefoed; de Roda Husman, Ana Maria; Fagerstedt, Patriq; Fick, Jerker; Flach, Carl-Fredrik; Gaze, William H; Kuroda, Makoto; Kvint, Kristian; Laxminarayan, Ramanan; Manaia, Celia M; Nielsen, Kaare Magne; Plant, Laura; Ploy, Marie-Cécile; Segovia, Jose Carlos; Simonet, Pascal; Smalla, Kornelia; Snape, Jason; Topp, Edward; van Hengel, Arjon J; Verner-Jeffreys, David W; Virta, Marko P J; Wellington, Elizabeth M; Wernersson, Ann-Sofie; Unión Europea. Comisión Europea. H2020
    There is growing understanding that the environment plays an important role both in the transmission of antibiotic resistant pathogens and in their evolution. Accordingly, researchers and stakeholders world-wide seek to further explore the mechanisms and drivers involved, quantify risks and identify suitable interventions. There is a clear value in establishing research needs and coordinating efforts within and across nations in order to best tackle this global challenge. At an international workshop in late September 2017, scientists from 14 countries with expertise on the environmental dimensions of antibiotic resistance gathered to define critical knowledge gaps. Four key areas were identified where research is urgently needed: 1) the relative contributions of different sources of antibiotics and antibiotic resistant bacteria into the environment; 2) the role of the environment, and particularly anthropogenic inputs, in the evolution of resistance; 3) the overall human and animal health impacts caused by exposure to environmental resistant bacteria; and 4) the efficacy and feasibility of different technological, social, economic and behavioral interventions to mitigate environmental antibiotic resistance.1.
  • Publication
    Aquellos maravillosos años… Treinta y ... años gestionando conocimiento de los demás tarea apasionante
    (2019-12-10) Represa, Domingo
    Servicios OTRI. Acciones del Plan Nacional de I+D para fomento de la protección. Resultados Solicitudes de Patentes de Universidades en España. Herramientas del Plan Nacional de I+D para las OTRI en sus Entidades. Consideraciones Personales. Resultado de la colaboración con empresa. Ejemplos de patentes