National rare diseases registry in Spain: pilot study of the Spanish Rare Diseases Registries Research Network (SpainRDR)

Supplement 7th European Conference on Rare Diseases and Orphan Products (ERCD 2014)Background The development of a national Rare Diseases (RD) registry in Spain was launched in 2012 with the project SpainRDR, supported by the International Rare Diseases Research Consortium (IRDiRC). SpainRDR includes two different strategies: patient registries addressed to patient outcome research and population-based registries addressed to epidemiologic research, health and social planning [1]. The pilot study aims to detect the difficulties of developing the national and population-based RD registry

Red de evaluación de tecnologías sanitarias en el SSPA. Metodología y procedimientos de trabajo

YesEl objetivo general de este documento es describir la metodología seguida para el establecimiento de la Red de evaluación de tecnologías sanitarias del SSPA y los procedimientos acordados por el grupo de trabajo para impulsar y armonizar el trabajo de las Comisiones provinciales de Evaluación de nuevas Tecnologías, productos e indicaciones en el Sistema Sanitario de Andalucía

Hospital costs associated with nosocomial infections in a pediatric intensive care unit

Objective: To estimate the additional cost attributable to nosocomial infection (NI) in a pediatric intensive care unit (PICU) and related factors. Methods: A prospective cohort study was conducted in all children admitted to the PICU of a tertiary-care pediatric hospital between 2008 and 2009. Descriptive and bivariate analyses were conducted of total direct costs due to PICU stay and medical procedures in patients with and without NI. A log-linear regression model was performed to determine the factors associated with higher total cost. Results: A total of 443 patients were studied and the prevalence of NI was 11.3%. The difference in the median total cost was €30,791.4 per patient between groups with and without NI. The median cost of PICU length of stay in patients with NI was almost eight times higher than the median cost of patients without NI. In patients with NI, the highest costs related to medical procedures were associated with antibiotics, enteral and parenteral feeding, and imaging tests. In the multivariate model, the factors associated with higher cost were infection, the performance of cardiovascular surgery, urgent admission, a higher pediatric risk mortality score, and the presence of immunosuppression. By contrast, older children and those with surgical admission generated lower cost. Conclusions: NI was associated with an increase in total cost, which implies that the prevention of these infections through specific interventions could be cost-effective and would help to increase the safety of healthcare systems

National Rare Disease Registries: overview from Spain

From 7th European Conference on Rare Diseases and Orphan Products (ECRD 2014).N