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

Reducing the environmental impact of surgery on a global scale: systematic review and co-prioritization with healthcare workers in 132 countries

Abstract Background Healthcare cannot achieve net-zero carbon without addressing operating theatres. The aim of this study was to prioritize feasible interventions to reduce the environmental impact of operating theatres. Methods This study adopted a four-phase Delphi consensus co-prioritization methodology. In phase 1, a systematic review of published interventions and global consultation of perioperative healthcare professionals were used to longlist interventions. In phase 2, iterative thematic analysis consolidated comparable interventions into a shortlist. In phase 3, the shortlist was co-prioritized based on patient and clinician views on acceptability, feasibility, and safety. In phase 4, ranked lists of interventions were presented by their relevance to high-income countries and low–middle-income countries. Results In phase 1, 43 interventions were identified, which had low uptake in practice according to 3042 professionals globally. In phase 2, a shortlist of 15 intervention domains was generated. In phase 3, interventions were deemed acceptable for more than 90 per cent of patients except for reducing general anaesthesia (84 per cent) and re-sterilization of ‘single-use’ consumables (86 per cent). In phase 4, the top three shortlisted interventions for high-income countries were: introducing recycling; reducing use of anaesthetic gases; and appropriate clinical waste processing. In phase 4, the top three shortlisted interventions for low–middle-income countries were: introducing reusable surgical devices; reducing use of consumables; and reducing the use of general anaesthesia. Conclusion This is a step toward environmentally sustainable operating environments with actionable interventions applicable to both high– and low–middle–income countries

Avistamiento de cetáceos en la Región de Murcia

En las aguas del golfo de Mazarrón se realizaron campañas para avistar cetáceos durante los años 1998, 1999, 2004, 2005, 2006, 2007 y 2008 a bordo de la goleta M/S Karyam, perteneciente a la empresa “Cetáceos y Navegación S.L.”. En todas las campañas de avistamiento las especies objetivo fueron las siguientes: Delfín mular (Tursiops truncatus), delfín listado, (Stenella coeruleoalba), delfín común (Delphinus delphis), calderón común (Globicephala melas), calderón gris (Grampus griseus), cachalote (Physeter macrocephalus), rorcual común (Balaenoptera physalus). Durante el periodo de muestreo se han realizado un total de 819 avistamientos con una estima aproximada de 21387 cetáceos, sin contar las salidas de avistamiento que aún se pueden hacer de octubre a diciembre del presente año. En los años comprendidos entre 2004 y 2008 las salidas de avistamientos exceden de las 100, repartidas entre los meses de marzo y diciembre, siendo la mayoría en los meses correspondientes a la estación de verano. En los años 1998 y 1999 se realizaron 31 y 67 días de campaña respectivamente, distribuidos prácticamente a lo largo de todo el año. Aún así se tienen en cuenta para establecer comparativas con años posteriores, ya que la diferencia en la abundancia de las especies avistadas es bastante notable. Con la información procedente de estas jornadas de avistamiento se realiza actualmente una caracterización de los cetáceos de las aguas de la Región de Murcia, en la que se detallan las características de cada una de las especies avistadas, una comparativa por años del número de individuos avistado por jornada, cantidad de grupos avistados por año, diversidad de especies por época del año y número de avistamiento por salida.In waters of the gulf of Mazarrón campaigns were realised to sight cetaceans during years 1998, 1999, 2004, 2005, 2006, 2007 and 2008 on board M/S Karyam, pertaining to the company “Cetáceos y Navegación S.L.” In all the campaigns of sighting the species objective were the following: Tursiops truncatus, Stenella coeruleoalba), Delphinus delphis, Globicephala melas, Grampus griseus, Physeter macrocephalus and Balaenoptera physalus. During the period of sampling a total of 819 sightings with an approximated esteem of 21387 Cetaceans has been realised. The annual excursions vary between 31 in 1998 to more than 100 in the years between 2004 and 2008 distributed throughout all the year. With that information a characterization of the cetaceans of waters of the Region of Murcia is realised at the moment