How phantom databases could contribute to conservation assessments.

Reliable data are needed to produce representative and useful conservation assessments for species. To this end, taxonomists and their unpublished, archived and unused databases-here called phantom databases-have great relevance for assessing the conservation status of species. Taxonomist's phantom databases are usually the result of a review work, and, if made available, they could be used to assess a species conservation status with greater accuracy, allowing for more effective conservation planning. Here we characterise these databases, provide examples of their relevance and recommend solutions to make these phantom databases available for conservation use. Databases of taxonomic and geographic information need not be phantom and could be made openly accessible to encourage their use in conservation activities.

Forever young: The successful story of a marine biotic index.

In 2000, the AZTI's Marine Biotic Index (AMBI) was published and was one of a number of marine benthic indices development to assess the ecological status of soft-bottom macroinvertebrates. This index, and its derivatives, has been very successful in its application to different geographical areas, across the world, as well as to different environments, from the intertidal to the abyssal, or from tidal freshwater to offshore habitats. In this review, we explain the story behind the AMBI development, and look for an explanation of the index's success. For doing that, we comment on the current practicalities of the index, we present the new AMBI species list, with 9251 taxa, we dismantle six myths around this index, and examine the past and the future of the index. We show that the solid ecological roots of the index make it a robust tool to assess the status of marine benthic communities, at any time and environment. Hence, we think that it will be 'forever young' helping managers in taking informed decisions to improve benthic marine systems.

Contra-réplica a "Visibilidad de los institutos de investigación sanitaria a través de la base de datos Web of Science" / Rejoinder to "Visibility of healthcare research institutes through the Web of Science database"

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eNewborn: The Information Technology Revolution and Challenges for Neonatal Networks.

Among preterm infants, 1-2% are born before 32 weeks of gestation or have a birth weight below 1,500 g. They contribute disproportionately to the burden of mortality and morbidity related to preterm birth, whether in the neonatal period or later in life. They are the target population studied in neonatal networks. Improving neonatal care and later outcome is a major issue in public health. Neonatologists, health care providers, public authorities, parents and families, industry, and all organizations dedicated to infant health must bring their efforts together and dedicate their actions in order to do so. Neonatal networks are the strongest platforms through which to achieve this goal. The progressive information technology (IT) revolution is leading to a new approach. The power of search engines and new technological devices opens extraordinary new perspectives in terms of speed, storing, sharing, and innovative approaches in providing health care. However, difficulties are expected with old applications that cannot evolve in the new IT environment. Security and privacy in data collection are future challenges to be addressed. Here, we describe the eNewborn project and its original software. The main functionalities are interactive navigation, harmonization with other formats, linkage with other databases, and strict security and privacy procedures.

Impacto del nivel socioeconómico en el conocimiento del ictus de la población general: un gradiente de desigualdad social / Effect of socioeconomic level on knowledge of stroke in the general population: A social inequality gradient

Objetivos: El nivel socioeconómico es un factor que condiciona el comportamiento individual ante la salud y las condiciones de salud de la población. Se evalúa la asociación entre factores socio-demográficos y el conocimiento del ictus en la población general. Método: Estudio transversal. Los sujetos fueron seleccionados por un sistema de asignación al azar doble. Se administró un cuestionario estructurado con preguntas abiertas y cerradas mediante entrevistas cara a cara. El «conocimiento adecuado» fue definido previamente. Se utilizaron el test de Mantel-Haenszel y la regresión logística con modelos ajustados para evaluar la asociación entre el conocimiento del ictus y las variables estudiadas. Resultados: Entrevistas, 2.411; 59,9% mujeres; edad media ± desviación estándar, 49,0 ± 17,3 años. El 74% residente en área urbana. Un 24,7% tenía estudios universitarios, el 15,2% un nivel de escolarización bajo. Solo el 2,1% declaraba ganar mas de 40.000 euros/año y un 29,9% menos de 10.000. Casi el 74% declaró tener un excelente o buen nivel de salud. El desempleo fue del 17,0%. La prevalencia de «conocimiento adecuado» fue del 39,7%(IC del 95%, 37,7%-41,6%). El análisis de tendencias mostró una asociación entre conocimiento y nivel económico (z = 10,14; p < 0,0001); nivel de estudios (z = 15,95; p < 0,0001), estado de salud (z = 7,92; p < 0,0001) y situación laboral (z = 8,98; p < 0,0001). Conclusiones: El nivel de estudios y renta, disponer de trabajo y gozar de salud son factores independientes de un «conocimiento adecuado» del ictus. Las campañas educativas deberían realizarse con un lenguaje sencillo y dirigirse con especial interés a las clases sociales mas desfavorecidas

Objectives: Socioeconomic status is a factor that influences health-related behaviour in individuals as well as health conditions in entire populations. The objective of the present study was to analyse the sociodemographic factors that may influence knowledge of stroke. Method: Cross-sectional study. A representative sample was selected by double randomisation. Face-to-face interviews were carried out by previously trained medical students using a structured questionnaire with open- and closed-ended questions. Adequate knowledge was previously defined. The Mantel-Haenszel test and adjusted logistic regression analysis were used to assess the association between knowledge of stroke and the study variables. Results: 2411 subjects were interviewed (59.9% women; mean age 49.0 [SD 17.3] years) Seventy-three per cent were residents of urban areas, 24.7% had a university education, and 15.2% had a low level of schooling. Only 2.1% reported earning more than 40 000 euros/year, with 29.9% earning less than 10 000. Nearly 74% reported having an excellent or good state of health. The unemployment rate was 17.0%. Prevalence of 'adequate knowledge' was 39.7% (95% CI: 37.7%-41.6%). Trend analysis showed an association between knowledge of stroke and income (z = 10.14, P < 0.0001); educational level (z = 15.95, P < 0.0001); state of health (z = 7.92, P < 0.0001); and employment status (z = 8.98,P < 0.0001). Conclusions: Educational level, income, employment status, and state of health are independent factors for adequate knowledge of stroke. Public awareness campaigns should present material using simple language and efforts should be directed toward the most disadvantaged social strata in particular

La cara oculta del estudio 329 y la manipulación de la evidencia científica / Study's 329 hiddens face and scientifics evidence manipulation

El emblemático ensayo clínico 329, financiado por Smith Kline Beecham (actualmente GlaxoSmith-Kline) y publicado en2001, permitió posicionar a la paroxetina como un tratamiento efectivo y seguro para la depresión mayor en adolescentes. En la presente editorial el autor describe los sucesos ocurridos luego de su publicación, partiendo de los cuestionamientos iniciales respecto de su eficacia, hasta llegar a los resultados de su reciente reanálisis (llevando adelante por la iniciativa internacional RIAT), el cual concluyo que dicho fármaco no solo no provee un beneficio adicional al placebo para la condición y población utilizada, sino que además se asocia a efectos adversos sustanciales que no habían sido reportados en el informe original. Se exploran además las repercusiones de este suceso en la comunidad científica y se hace un señalamiento de la necesidad de permitir el acceso a las bases de datos originales que sustentan los resultados y conclusiones de las investigaciones publicadas, como mecanismo de transparencia superador a la revisión por pares. (AU)

The emblematic 329 study, funded by Smith Kline Beecham (now GlaxoSmith-Kline) and published in 2001, allowed to position paroxetine as an effective and safe treatment for major depression in adolescents. In this editorial, the author describes the events after its publication, from the initial concerns about its effectiveness, to the results of its recent reanalysis (accounted by the international RIAT initiative), which concluded that the drug not only does not provide an additional benefit than placebo, but is also associated with significant adverse effects that were not reported in the original report. It also explores the repercussions generated in the scientific community by this event, pointing out the need to allow access to original databases that support the findings and conclusions of published research, as an overcoming mechanism for transparency to the traditional peerreview. Agustín Ciapponi Study's 329 hiddens face and scientifics evidence manipulation. (AU)

Análisis de datos de pacientes subagudos con información registrada en el Conjunto Mínimo Básico de Datos Sociosanitarios (CMBD-RSS) / Data analysis of subacute patients with registered Information in Minimum Basic Data set for Social-Healthcare (CMBD-RSS), Spain

Fundamentos: Es necesario profundizar en el conocimiento del conjunto mínimo básico de datos (CMBD-RSS) de la línea sociosanitaria de pacientes subagudos (con patología crónica asociada y frecuentes ingresos). El objetivo de este estudio fue conocer las características sanitarias de este tipo de pacientes. Métodos: Muestra de 660 pacientes que ingresaron en camas de subagudos del Hospital Santa Caterina (Región Sanitaria Girona), de octubre de 2013 a diciembre de 2014. La fuente de información fue el CMBD-RSS. Se realizó análisis estadístico descriptivo y se verificó la relación entre variables: número de días de estancia y edad, procedencia del paciente y días de estancia (Significación de Mann-Whitney); diagnóstico principal y días de estancia (Kruskal-Wallis). Se contrastaron la procedencia y el diagnóstico principal mediante χ2 de Pearson y el coeficiente V de Cramer). Resultados: La edad media de las personas de la muestra fue de 83 años, el 55% eran mujeres. Los cinco grupos de enfermedades que concentraron el 80% de los diagnósticos de los pacientes fueron trastorno mental, enfermedades del sistema nervioso, cardiovasculares, respiratoria e infecciones genitourinarias). Los pacientes que procedieron del hospital, tuvieron una estancia media 8 días inferior a los procedentes de domicilio (9 días). En el 80% de los casos se retornó al domicilio al alta. Conclusiones: Las personas con patología crónica asociada con frecuentes ingresos hospitalarios configuran un grupo de riesgo importante. La elevada edad y la descompensación clínica añaden complejidad. Una correcta valoración del paciente al inicio del episodio facilita la asignación del recurso más adecuado. En la muestra estudiada se plasman las patologías más prevalentes, la procedencia, la estancia media y el destino al alta (AU)

Background: It is necessary to deepen in the knowledge of the Basic Minimum Set of Data (CMBD-RSS) of patients with chronic pathology associated and frequent hospitalisations (the subacute care). The aim of this study was to analyse the sanitary information of these patients, once initiated the subacute program. Methods: We used data of 660 patients hospitalised in the subacute care unit at the Santa Caterina Hospital, sanitary region of Girona, from October 2013 to December 2014. The CMBD data base was analysed using SPSS Statistics 15.0. We verified the relationship between variables i.e. length of stay and age; origin of the patient admission and length of stay (Mann- Whitney U Test); main diagnosis and length of stay (Kruskal-Wallis). We also studied the relationship between origin of the patient admission and main diagnosis (Chi-square test and Cramer’s V). Results: The average age of patients was 83 years old, and mainly female profile (55%). Five illnesses concentrated 80% of all patients’ diagnosed diseases (mental health problems, nervous system diseases, circulatory problems, respiratory system problems and genitourinary infections). Patients admitted from hospitals had a shorter length of stay (8 days) than patients admitted from home (9 days). 80% of cases patients come back home after the hospital discharge. Conclusions: People with chronic pathology associated and frequent hospitalisations are an important group of risk. Elderly and clinical decompensations add complexity to these cases. The evaluation of these patients at the admission and discharge procedures optimise the use of the resources (AU)

Problemas de salud de los cuidadores familiares de personas mayores de 65 años afectadas de insuficiencia renal crónica: una revisión sistemática / Health problems of family caregivers of people over 65 suffering from chronic renal failure: a systematic review

La insuficiencia renal crónica exige unos cuidados específicos, continuos y variados, lo que afecta a la salud de los cuidadores familiares. Por ello, nos planteamos conocer los problemas de salud de los cuidadores familiares de personas afectadas de insuficiencia renal crónica mayores de 65 años, debido al mayor riesgo y prevalencia a partir de esta edad. Para este fin, se realizó una revisión sistemática de la literatura científica en diferentes bases de datos, nacionales e internacionales, de los últimos diez años. Se seleccionaron 19 estudios. Estos hacen referencia a la influencia de la severidad de la carga y a la disminución de la calidad de vida de estos cuidadores, siendo las alteraciones psicológicas los problemas de salud mayormente expuestos. Este conocimiento puede servir para establecer estrategias de abordaje socio-sanitario, que conduzcan hacia la mejora de la calidad de vida, no solo de los cuidadores sino también, de los pacientes (AU)

Chronic renal insufficiency demands specific, continuous and varied care, which affects the health of family caregivers. Therefore, we propose to determine the health problems of family caregivers who care for patients over 65 years with chronic renal failure, due to increased risk and prevalence from this age onwards. For this purpose, we made a systematic review of the scientific literature on different national and international databases in the last ten years. Nineteen studies were selected. These refer to the influence of the severity of the burden and lower quality of life of these caregivers. Psychological disorders are the health problems that are most mentioned. This knowledge may serve for developing strategies for a socio-medical approach, which might lead to improved quality of life, not only of caregivers but also of patients (AU)

Más allá de compartir los datos / Beyond "data sharing"

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Desarrollo de una base de datos interrrelacionada para la toma de decisiones clínicas en un servicio de cirugía general / Development of an interrelated datebase for clinical decisión making in a general surgery department

Introducción: Con el fin de obtener datos estructurados para la monitorización y evaluación de indicadores clínicos y de gestión que sirviesen de apoyo en la toma de decisiones clínicas elaboramos una base de datos interrelacionada (BDI) a partir de registros hospitalarios existentes. Material y Métodos: Diseño prospectivo de una cohorte de intervenciones quirúrgicas programadas realizadas en el Servicio de Cirugía General de un hospital universitario de tercer nivel. Se obtuvieron un total de 4.572 registros entre el 1 de enero de 2011 y el 31 de marzo de 2013. A cada registro se le asoció información proporcionada por diferentes bases hospitalarias: Conjunto Mínimo Básico de Datos (CMBD), el sistema de gestión de pacientes (HP-HIS) e información aportada por un cirujano experto como auditor, que estableció el procedimiento principal depurado, deducido del informe quirúrgico y de alta del paciente. Los procedimientos se agruparon en 9 áreas quirúrgicas, y se clasificó su complejidad en tres grados. Resultados y Conclusiones: La BDI permite monitorizar la actividad de un servicio quirúrgico con un elevado volumen de actividad, alta complejidad técnica, gran número de cirujanos, y pacientes con variadas comorbilidades, etc. En un futuro inmediato se pretende evaluar la fiabilidad de los datos analizando el registro del procedimiento principal en HP-HIS y CMBD frente a la Historia Clínica. En una segunda etapa, se realizará la evaluación de diversos indicadores validados, que sirvan, mediante la comparación con los estándares, de apoyo en la toma de decisiones clínicas: eventos adversos, gravedad de estos, evitabilidad, desviaciones de la tendencia, etc

Introduction: In order to obtain structured monitoring and evaluation of clinical and management indicators that would serve to support clinical decision making, we have created an interrelated database (BDI) from existing hospital records. Methods: Prospective cohort of scheduled surgeries performed in the Department of General Surgery of a university hospital. A total of 4,572 records were recorded between January 1, 2011 and March 31, 2013. Each record was linked to information provided by different hospital databases: Minimum Basic Data Set (CMBD), the patient management system (HP-HIS) and information provided by a skilled surgeon as auditor, who established the main refined procedures obtained from the surgical and discharge reports. The procedures were grouped into nine surgical areas and classified into three complexity grades. Results and Conclusions: The BDI allows monitoring the activity of a surgical Department with a high volume of activity, high technical complexity, many surgeons and patients with several comorbidities, etc. In the immediate future, we intend to assess the reliability of the BDI data comparing the record of the main procedure in HP-HIS and CMBD to the medical record. In a second stage, we intend to assess several validated indicators that may serve, through a comparison with the standards, as support in the making of clinical decisions: adverse events, their severity and preventability, deviations from the trend, etc

Desarrollo y validación de un algoritmo para identificar recidivas de cáncer a partir de bases de datos hospitalarias / Development and validation of an algorithm to identify cancer recurrences from hospital data bases

Objetivos. Los registros de tumores hospitalarios y las bases de datos hospitalarias son una fuente de información valiosa y eficiente para la investigación de recidivas de cáncer. El objetivo de este estudio fue desarrollar y validar algoritmos para identificar recidivas de cáncer de mama. Métodos. Estudio observacional retrospectivo de casos de cáncer de mama del registro de tumores de un centro hospitalario universitario de tercer nivel diagnosticados entre 2003 y 2009. A partir del cruce de bases de datos hospitalarias y la construcción de definiciones operativas se obtuvieron diferentes algoritmos de probable recidiva de cáncer con su correspondiente sensibilidad, especificidad, valor predictivo positivo y valor predictivo negativo. Resultados. Se identificaron 1.523 pacientes diagnosticados de cáncer entre 2003 y 2009. La solicitud de gammagrafía ósea tras 6 meses desde el primer tratamiento oncológico obtuvo la mayor sensibilidad (53,8%) y valor predictivo negativo (93,8%), y la realización de una prueba de anatomía patológica tras 6 meses desde el diagnóstico obtuvo la mayor especificidad (93,8%) y valor predictivo negativo (92,6%). La combinación de definiciones aumentó la especificidad y el valor predictivo positivo pero disminuyó la sensibilidad. Conclusiones. Se elaboraron diferentes algoritmos diagnósticos cuyas definiciones pueden ser útiles según los intereses y recursos del investigador. Un mayor valor predictivo positivo podría interesar para una estimación rápida del número de casos, y un mayor valor predictivo negativo para dar una estimación más exacta si se dispone de mayores recursos. Estos algoritmos se configuran como una herramienta versátil y adaptable a otros tumores y a las necesidades del investigador (AU)

Objectives. Hospital cancer registries and hospital databases are valuable and efficient sources of information for research into cancer recurrences. The aim of this study was to develop and validate algorithms for the detection of breast cancer recurrence. Methods. A retrospective observational study was conducted on breast cancer cases from the cancer registry of a third level university hospital diagnosed between 2003 and 2009. Different probable cancer recurrence algorithms were obtained by linking the hospital databases and the construction of several operational definitions, with their corresponding sensitivity, specificity, positive predictive value and negative predictive value. Results. A total of 1,523 patients were diagnosed of breast cancer between 2003 and 2009. A request for bone gammagraphy after 6 months from the first oncological treatment showed the highest sensitivity (53.8%) and negative predictive value (93.8%), and a pathology test after 6 months after the diagnosis showed the highest specificity (93.8%) and negative predictive value (92.6%). The combination of different definitions increased the specificity and the positive predictive value, but decreased the sensitivity. Conclusions. Several diagnostic algorithms were obtained, and the different definitions could be useful depending on the interest and resources of the researcher. A higher positive predictive value could be interesting for a quick estimation of the number of cases, and a higher negative predictive value for a more exact estimation if more resources are available. It is a versatile and adaptable tool for other types of tumors, as well as for the needs of the researcher (AU)

Next-generation phenotyping: requirements and strategies for enhancing our understanding of genotype-phenotype relationships and its relevance to crop improvement.

More accurate and precise phenotyping strategies are necessary to empower high-resolution linkage mapping and genome-wide association studies and for training genomic selection models in plant improvement. Within this framework, the objective of modern phenotyping is to increase the accuracy, precision and throughput of phenotypic estimation at all levels of biological organization while reducing costs and minimizing labor through automation, remote sensing, improved data integration and experimental design. Much like the efforts to optimize genotyping during the 1980s and 1990s, designing effective phenotyping initiatives today requires multi-faceted collaborations between biologists, computer scientists, statisticians and engineers. Robust phenotyping systems are needed to characterize the full suite of genetic factors that contribute to quantitative phenotypic variation across cells, organs and tissues, developmental stages, years, environments, species and research programs. Next-generation phenotyping generates significantly more data than previously and requires novel data management, access and storage systems, increased use of ontologies to facilitate data integration, and new statistical tools for enhancing experimental design and extracting biologically meaningful signal from environmental and experimental noise. To ensure relevance, the implementation of efficient and informative phenotyping experiments also requires familiarity with diverse germplasm resources, population structures, and target populations of environments. Today, phenotyping is quickly emerging as the major operational bottleneck limiting the power of genetic analysis and genomic prediction. The challenge for the next generation of quantitative geneticists and plant breeders is not only to understand the genetic basis of complex trait variation, but also to use that knowledge to efficiently synthesize twenty-first century crop varieties.