3 research outputs found
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
Guía Clínica Española del Acceso Vascular para Hemodiálisis
El acceso vascular para hemodiálisis es esencial para el enfermo renal tanto por su
morbimortalidad asociada como por su repercusión en la calidad de vida. El proceso que
va desde la creación y mantenimiento del acceso vascular hasta el tratamiento de sus
complicaciones constituye un reto para la toma de decisiones debido a la complejidad de la
patología existente y a la diversidad de especialidades involucradas. Con el fin de conseguir
un abordaje consensuado, el Grupo Español Multidisciplinar del Acceso Vascular (GEMAV),
que incluye expertos de las cinco sociedades científicas implicadas (nefrología [S.E.N.], cirugía
vascular [SEACV], radiología vascular e intervencionista [SERAM-SERVEI], enfermedades
infecciosas [SEIMC] y enfermería nefrológica [SEDEN]), con el soporte metodológico del Centro
Cochrane Iberoamericano, ha realizado una actualización de la Guía del Acceso Vascular
para Hemodiálisis publicada en 2005. Esta guía mantiene una estructura similar, revisando
la evidencia sin renunciar a la vertiente docente, pero se aportan como novedades, por un
lado, la metodología en su elaboración, siguiendo las directrices del sistema GRADE con
el objetivo de traducir esta revisión sistemática de la evidencia en recomendaciones que
faciliten la toma de decisiones en la práctica clínica habitual y, por otro, el establecimiento
de indicadores de calidad que permitan monitorizar la calidad asistencial.Vascular access for haemodialysis is key in renal patients both due to its associated morbidity
and mortality and due to its impact on quality of life. The process, from the creation and
maintenance of vascular access to the treatment of its complications, represents a challenge
when it comes to decision-making, due to the complexity of the existing disease and the
diversity of the specialities involved. With a view to finding a common approach, the Spanish
Multidisciplinary Group on Vascular Access (GEMAV), which includes experts from the five
scientific societies involved (nephrology [S.E.N.], vascular surgery [SEACV], vascular and
interventional radiology [SERAM-SERVEI], infectious diseases [SEIMC] and nephrology nursing
[SEDEN]), along with the methodological support of the Cochrane Center, has updated the
Guidelines on Vascular Access for Haemodialysis, published in 2005. These guidelines maintain
a similar structure, in that they review the evidence without compromising the educational
aspects. However, on one hand, they provide an update to methodology development following
the guidelines of the GRADE system in order to translate this systematic review of evidence
into recommendations that facilitate decision-making in routine clinical practice, and, on
the other hand, the guidelines establish quality indicators which make it possible to monitor
the quality of healthcare
Guía Clínica Española del Acceso Vascular para Hemodiálisis
El acceso vascular para hemodiálisis es esencial para el enfermo renal tanto por su
morbimortalidad asociada como por su repercusión en la calidad de vida. El proceso que
va desde la creación y mantenimiento del acceso vascular hasta el tratamiento de sus
complicaciones constituye un reto para la toma de decisiones debido a la complejidad de la
patología existente y a la diversidad de especialidades involucradas. Con el fin de conseguir
un abordaje consensuado, el Grupo Español Multidisciplinar del Acceso Vascular (GEMAV),
que incluye expertos de las cinco sociedades científicas implicadas (nefrología [S.E.N.], cirugía
vascular [SEACV], radiología vascular e intervencionista [SERAM-SERVEI], enfermedades
infecciosas [SEIMC] y enfermería nefrológica [SEDEN]), con el soporte metodológico del Centro
Cochrane Iberoamericano, ha realizado una actualización de la Guía del Acceso Vascular
para Hemodiálisis publicada en 2005. Esta guía mantiene una estructura similar, revisando
la evidencia sin renunciar a la vertiente docente, pero se aportan como novedades, por un
lado, la metodología en su elaboración, siguiendo las directrices del sistema GRADE con
el objetivo de traducir esta revisión sistemática de la evidencia en recomendaciones que
faciliten la toma de decisiones en la práctica clínica habitual y, por otro, el establecimiento
de indicadores de calidad que permitan monitorizar la calidad asistencial.Vascular access for haemodialysis is key in renal patients both due to its associated morbidity
and mortality and due to its impact on quality of life. The process, from the creation and
maintenance of vascular access to the treatment of its complications, represents a challenge
when it comes to decision-making, due to the complexity of the existing disease and the
diversity of the specialities involved. With a view to finding a common approach, the Spanish
Multidisciplinary Group on Vascular Access (GEMAV), which includes experts from the five
scientific societies involved (nephrology [S.E.N.], vascular surgery [SEACV], vascular and
interventional radiology [SERAM-SERVEI], infectious diseases [SEIMC] and nephrology nursing
[SEDEN]), along with the methodological support of the Cochrane Center, has updated the
Guidelines on Vascular Access for Haemodialysis, published in 2005. These guidelines maintain
a similar structure, in that they review the evidence without compromising the educational
aspects. However, on one hand, they provide an update to methodology development following
the guidelines of the GRADE system in order to translate this systematic review of evidence
into recommendations that facilitate decision-making in routine clinical practice, and, on
the other hand, the guidelines establish quality indicators which make it possible to monitor
the quality of healthcare