Unprecedented increase of West Nile virus neuroinvasive disease, Spain, summer 2020.

Cases of West Nile neuroinvasive disease (WNND) in Spain increased in summer 2020. Here we report on this increase and the local, regional and national public health measures taken in response. We analysed data from regional surveillance networks and the National Epidemiological Surveillance Network, both for human and animal West Nile virus (WNV) infection. During the 2020 season, a total of 77 human cases of WNV infection (median age 65 years; 60% males) were detected in the south-west of Spain; 72 (94%) of these cases developed WNND, presenting as meningoencephalitis, seven of which were fatal. In the previous two decades, only six human cases of WNND were detected in Spain. Reduced activities for vector control this season, together with other factors, might have contributed to the massive increase. Public health measures including vector control, campaigns to raise awareness among physicians and the general population, and interventions to ensure the safety of donations of blood products, organs, cells and tissues were effective to reduce transmission. Going forward, maintenance of vector control activities and an update of the vector-borne diseases response plan in Spain is needed.

[Consolidated HIV-AIDS epidemiological surveillance system in Extremadura, period 1980-2018]. / Vigilancia unificada de la infección por VIH y enfermedad de Sida en Extremadura en el período 1980-2018.

OBJECTIVE: Implementation of epidemiological surveillance systems is required to design a programme for HIV epidemic. The focus of this article is to report the HIV-AIDS incidence and age of infection evolution in Extremadura, during the period 1980-2018. METHODS: A retrospective, descriptive study of anual incidence of HIV-infection new diagnosis and AIDS diagnosis in Extremadura, between 1981 and 2018, including both years. Case definitions were considered according to national surveillance protocol. RESULTS: By the end of 2018 the consolidated HIV-AIDS epidemiological surveillance system had registered 3,039 cases, which 1,954 cases were considered incidents. In the nineties the highest incidents rates per hundred thousand inhabitants of HIV infection (10.45 in 1990) and AIDS (13.57 in 1996) were reached, decreasing continuously from 2000, being in this year of 4.66 for HIV infection and 3.54 in AIDS. The cumulative incidence of the period was four times higher in men compared to women. The average age at diagnosis increased in recent years in HIV infection (27.80 years in 1990 compared to 37.32 years in 2018) and in AIDS disease (30 years in 1990 compared to 36 years in 2018). A parallel evolution of the diagnoses of HIV infection and of AIDS was observed, with a lag of 4 years coinciding with the beginning of the series, reducing since 2005 by approximately half the diagnoses of AIDS. CONCLUSIONS: In Extremadura the HIV infection evolution was similar to national available data. At the beginning of the period of study almost all the HIV cases soon after turned to AIDS but finally the AIDS diagnoses tended to decrease due to early and effective treatments.

OBJETIVO: La implantación de sistemas de información epidemiológica es fundamental para planificar la respuesta a la epidemia de infección por VIH. Nuestro objetivo fue presentar la evolución de la incidencia de la fase de infección por VIH y de enfermedad de Sida, y la edad de presentación de ambas en Extremadura, de 1980 a 2018. METODOS: Se realizó un estudio descriptivo, retrospectivo longitudinal de la incidencia anual de nuevos diagnósticos de infección por VIH y diagnósticos de Sida en Extremadura de 1981 a 2018, ambos inclusive. Las definiciones de caso se hicieron según el protocolo de vigilancia nacional. Se realizó un análisis descriptivo de los datos absolutos y se calculó la incidencia acumulada anual por año de diagnóstico expresada en casos por cada cien mil habitantes. RESULTADOS: A 31 de diciembre de 2018, el sistema unificado de vigilancia de infección VIH-Sida registraba 3.039 casos, de los cuales 1.954 se consideraron incidentes. En la década de los 90 se alcanzaron las mayores tasas de incidencias por cada cien mil habitantes de infección por VIH (10,45 en 1990) y en enfermedad de Sida (13,57 en 1996), disminuyendo de manera continua a partir del 2000, siendo en este año de 4,66 para infección por VIH y de 3,54 en SIDA. La incidencia acumulada del período fue cuatro veces superior en hombres respecto a mujeres. La edad media al diagnóstico aumentó en los últimos años en infección por VIH (27,80 años en 1990 frente a 37,32 años en 2018) y en enfermedad de Sida (30 años en 1990 frente a 36 años en 2018). Se observó una evolución paralela de los diagnósticos de infección por VIH y de Sida, con un desfase de 4 años coincidiendo con el inicio de la serie, disminuyendo a partir del año 2005 los diagnósticos de Sida aproximadamente a la mitad. CONCLUSIONES: La evolución de la infección por VIH-Sida en Extremadura es similar a la observada a nivel nacional. Al inicio del periodo, prácticamente todos los casos de infección-VIH pasan a Sida en unos pocos años. Al final, los diagnósticos de Sida tienden a desaparecer debido a tratamientos eficaces y precoces.

Vigilancia unificada de la infección por VIH y enfermedad de Sida en Extremadura en el período 1980-2018 / Consolidated HIV-AIDS epidemiological surveillance system in Extremadura, period 1980-2018

OBJETIVO: La implantación de sistemas de información epidemiológica es fundamental para planificar la respuesta a la epidemia de infección por VIH. Nuestro objetivo fue presentar la evolución de la incidencia de la fase de infección por VIH y de enfermedad de Sida, y la edad de presentación de ambas en Extremadura, de 1980 a 2018. MÉTODOS: Se realizó un estudio descriptivo, retrospectivo longitudinal de la incidencia anual de nuevos diagnósticos de infección por VIH y diagnósticos de Sida en Extremadura de 1981 a 2018, ambos inclusive. Las definiciones de caso se hicieron según el protocolo de vigilancia nacional. Se realizó un análisis descriptivo de los datos absolutos y se calculó la incidencia acumulada anual por año de diagnóstico expresada en casos por cada cien mil habitantes. RESULTADOS: A 31 de diciembre de 2018, el sistema unificado de vigilancia de infección VIH-Sida registraba 3.039 casos, de los cuales 1.954 se consideraron incidentes. En la década de los 90 se alcanzaron las mayores tasas de incidencias por cada cien mil habitantes de infección por VIH (10,45 en 1990) y en enfermedad de Sida (13,57 en 1996), disminuyendo de manera continua a partir del 2000, siendo en este año de 4,66 para infección por VIH y de 3,54 en SIDA. La incidencia acumulada del período fue cuatro veces superior en hombres respecto a mujeres. La edad media al diagnóstico aumentó en los últimos años en infección por VIH (27,80 años en 1990 frente a 37,32 años en 2018) y en enfermedad de Sida (30 años en 1990 frente a 36 años en 2018). Se observó una evolución paralela de los diagnósticos de infección por VIH y de Sida, con un desfase de 4 años coincidiendo con el inicio de la serie, disminuyendo a partir del año 2005 los diagnósticos de Sida aproximadamente a la mitad. CONCLUSIONES: La evolución de la infección por VIH-Sida en Extremadura es similar a la observada a nivel nacional. Al inicio del periodo, prácticamente todos los casos de infección-VIH pasan a Sida en unos pocos años. Al final, los diagnósticos de Sida tienden a desaparecer debido a tratamientos eficaces y precoces

OBJECTIVE: Implementation of epidemiological surveillance systems is required to design a programme for HIV epidemic. The focus of this article is to report the HIV-AIDS incidence and age of infection evolution in Extremadura, during the period 1980-2018. METHODS: A retrospective, descriptive study of anual incidence of HIV-infection new diagnosis and AIDS diagnosis in Extremadura, between 1981 and 2018, including both years. Case definitions were considered according to national surveillance protocol. RESULTS: By the end of 2018 the consolidated HIV-AIDS epidemiological surveillance system had registered 3,039 cases, which 1,954 cases were considered incidents. In the nineties the highest incidents rates per hundred thousand inhabitants of HIV infection (10.45 in 1990) and AIDS (13.57 in 1996) were reached, decreasing continuously from 2000, being in this year of 4.66 for HIV infection and 3.54 in AIDS. The cumulative incidence of the period was four times higher in men compared to women. The average age at diagnosis increased in recent years in HIV infection (27.80 years in 1990 compared to 37.32 years in 2018) and in AIDS disease (30 years in 1990 compared to 36 years in 2018). A parallel evolution of the diagnoses of HIV infection and of AIDS was observed, with a lag of 4 years coinciding with the beginning of the series, reducing since 2005 by approximately half the diagnoses of AIDS. CONCLUSIONS: In Extremadura the HIV infection evolution was similar to national available data. At the beginning of the period of study almost all the HIV cases soon after turned to AIDS but finally the AIDS diagnoses tended to decrease due to early and effective treatments

[cycEVA study: case control study measuring influenza vaccine effectiveness in Spain, 2008-2013]. / Estudio cycEVA: casos y controles para la estimación de la efectividad de la vacuna antigripal en España, 2008-2013.

BACKGROUND: In Spain, influenza vaccine effectiveness (EV) is estimated since 2008-09 season through the cycEVA case-control study, the Spanish component of the European I-MOVE (Monitoring Influenza Vaccine Effectiveness in the EU/EEA) network. We aimed at describing cycEVA performance in its five consolidated editions 2008/09 -; 2012/13. METHODS: During the study period the following indicators were analysed: 1) the participation of sentinel general practitioners and pediatricians (MP), 2) the population studied and the study period, 3) the data quality and 4) the dissemination of the cycEVA results. Trend analysis of the indicators was done using the Cochran-Armitage test to compute the Annual Percentage Change (PCA). RESULTS: The number of participating MP increased from 164 in 2008-09 to 246 in the following editions. The percentage of MP recruiting at least one patient increased significantly annually (PCA = 15.33%). The percentage of recruited patients included into the analysis increased (PCA=5.91%) from 77% in 2008-09 to more than 95% in the following editions. The percentage of cycEVA patients contributing to the I-MOVE study ranged between 23% and 30% in the pilot and 2011-12 editions respectively.. Final results were disseminated in quartile 2 peer-reviewed journals and 2010-11 and 2011-12 preliminary EV estimates were published in quartile 1 journals. cycEVA publications received 97 citations. CONCLUSION: cycEVA study achieved more quality information, timely EV estimates and a higher impact of the results.

Estudio cycEVA: caos y controles para la estimación de la efectividad de la vacuna antigripal en España, 2008-2013 / cycEVA study: case control study Measuring influenza vaccine effectiveness in Spain, 2008-2013

Fundamentos: Desde 2008-09 la efectividad de la vacuna (EV) antigripal en España se estima con el estudio de casos y controles para la evaluación de la EV antigripal (cycEVA), componente español de la red europea (Influenza- Monitoring Vaccine Effectiveness (I-MOVE). El objetivo es describir la evolución del estudio cycEVAdurante las cinco temporadas del período 2008/09-2012/13. Métodos: Se analizaron los siguientes indicadores: 1) participación de los médicos/pediatras centinela (MP); 2) población y periodo de estudio, 3) calidad de los datos y 4) difusión de los resultados mediantes publicaciones. Se calculó el porcentaje anual de cambio constante de los indicadores analizándose su tendencia mediante el test de Cochran-Armitage. Resultados: El número de MP participantes aumentó de 164 en 2008-09 hasta 246 en ediciones posteriores. El porcentaje de médicos que reclutaron al menos un paciente experimentó un cambio anual significativo (PCA) del 15,33%. El porcentaje de pacientes reclutados incluidos en el análisis aumentó del 77% en 2008-09 a más del 95% en las siguientes ediciones (PCA=5,91%). El porcentaje de casos y controles participantes en cycEVA sobre el total de pacientes que contribuyeron al estudio europeo I-MOVE osciló entre el 23% en la edición piloto y 30% en la temporada 2011-12. Los resultados finales se difundieron en revistas científicas con un factor de impacto situado en el cuartil 2 y en 2010-11 y 2011-12 se publicaron resultados preliminares en revistas con un factor de impacto situado en el cuartil 1 (97 citas). Conclusiones: La experiencia del estudio cycEVA se reflejó en una mejora en la oportunidad e impacto de sus resultados, cruciales para orientar las recomendaciones anuales de vacunación antigripal (AU)

Background: In Spain, influenza vaccine effectiveness (EV) is estimated since 2008-09 season through the cycEVAcase-control study, the Spanish component of the European I-MOVE (Monitoring Influenza Vaccine Effectiveness in the EU/EEA) network.We aimed at describing cycEVAperformance in its five consolidated editions 2008/09 - 2012/13. Methods: During the study period the following indicators were analysed: 1) the participation of sentinel general practitioners and pediatricians (MP), 2) the population studied and the study period, 3) the data quality and 4) the dissemination of the cycEVA results. Trend analysis of the indicators was done using the Cochran-Armitage test to compute theAnnual Percentage Change (PCA). Results: The number of participatingMP increased from 164 in 2008-09 to 246 in the following editions. The percentage of MP recruiting at least one patient increased significantly annually (PCA = 15.33%). The percentage of recruited patients included into the analysis increased (PCA=5.91%) from 77% in 2008-09 to more than 95% in the following editions. The percentage of cycEVA patients contributing to the I-MOVE study ranged between 23% and 30% in the pilot and 2011-12 editions respectively.. Final results were disseminated in quartile 2 peer-reviewed journals and 2010-11 and 2011-12 preliminary EV estimates were published in quartile 1 journals. cycEVA publications received 97 citations. Conclusion: cycEVA study achieved more quality information, timely EV estimates and a higher impact of the results (AU)

[Mortality and hospital utilization due to breast cancer in Extremadura, Spain (2002-2004)]. / Mortalidad y frecuencia hospitalaria de tumor maligno de mama en Extremadura (2002-2004).

OBJECTIVE: To provide an update on breast cancer mortality and hospital utilization in the autonomous region of Extremadura (Spain). METHOD: We performed a retrospective, cross-sectional study of breast cancer in Extremadura, using the minimum data set and the death register as data sources. The means and standard deviation (SD) are presented. Crude, age-specific, and standardized mortality rates were calculated and expressed as rates per 100,000 women. The potential years of life lost were also calculated. RESULTS: In the period studied, there were 413 deaths, 1,233 hospital admissions, and 1,809 discharges due to malignant breast disease. The mean age at the time of death and hospital discharge was 70.0 years (SD 14.9) and 59.9 years (SD 14.3), respectively. The mean length of hospital stay was 8.9 days (SD 6.3). A total of 3,423 potential years of life were lost. The highest mortality rates of breast cancer were observed in the health area of Llerena and the lowest in the health area of Coria. CONCLUSIONS: The pattern of breast cancer mortality in Extremadura is typical of developed countries with higher mortality among older age groups. The aged-adjusted rate in Extremadura is lower than that in Spain for the period 1996-2000.

[Dialysis and transplant. Spain in 2005]. / Informe de Situación de Diálisis y Trasplante en España, 2005.

In 2005, renal replace treatment (dialysis and transplant) was necessary for about 40,000 people, without being known the number accurate and either their basic characteristics, such as: time in treatment, modality or treatment changes. The presented data cover the 76% of the Spanish population and are the result of the cooperation among technicians of registries, nephrologists and transplant coordinations. 4,125 people started RRT in 2005, the total estimated acceptance rate for renal replacement therapy in adults in Spain was 126 pmp and regarding other European countries it locates us in an intermediate area. The incidence rate seems to keep stable in the last years although there were some differences among communities (from 104 pmp in Castile and Leon to 186 pmp in Canary Islands). Diabetes Mellitus is the most diagnosed cause of renal failure in 2005, more than 20% of patients, followed by vascular diseases. The estimated prevalence of renal replacement therapy in Spain at the end of 2005 was 903 pmp, with important variations among communities (from 806 pmp in Cantabria to 1056 pmp in Valencia Region). The 47% of prevalent RRT patients had a functioning transplant. Mortality on haemodialysis and peritoneal dialysis was 13.7% and 10.8% respectively. Mortality on transplant was 1.3%, one of the lowest values registered so far. Mortality on renal replacement therapy was around 5% among patients from 45 to 64 years, 11% between 65 and 74 years and 19% among the patients older than 75 years.

[Role of nurses from Extremadura in the Spanish drug surveillance system (2000-2005)]. / Papel de la enfermería extremeña en el Sistema Español de Farmacovigilancia (2000-2005).

INTRODUCTION: The main aim of pharmacovigilance, a public health activity, is to communicate, collect and evaluate notifications of adverse reactions to drugs (ARD) received from health professionals. Among this collective, nurses are in an optimal position due to their knowledge of pharmacology and their role in the front line of patient care. METHOD: We performed a search of the ARD reported by nursing staff in Extremadura from january 1, 2000 to december 31, 2005 through the pharmacovigilance information system of Extremadura. RESULTS: A total of 1,502 ARD were notified to the Spanish pharmacovigilance system by nurses throughout Spain (3.32% of the total) and 10 RAM by nurses from Extremadura (0.64% of the total number of RAM notified by nurses). The highest number of ARD corresponded to the year 2000, with 20% of the total being urticaria. The causative agents were vaccines against diphtheria, tetanus, pertussis and poliomyelitis (30% of the total). According to the notifiers, 50% corresponded to the extrahospital setting. Only one ARD required emergency care, while 40% of affected individuals required drug therapy to alleviate the effects of the ARD. Seventy percent of the ARD were mild, while the remainder were moderate. ARD occurred in men and women equally, and the mean age of affected individuals was 37.4 years. CONCLUSION: ARD are underreported by nurses, influenced by low motivation to notify these events and lack of knowledge of how they should be reported.

Papel de la enfermería extremeña en el Sistema Español de Farmacovigilancia (2000-2005) / Role of nurses from Extremadura in the Spanish pharmacovigilance system (2000-2005)

Introducción. La farmacovigilancia es una de las actividades de la salud pública que tiene como misión principal la comunicación, la recogida y evaluación de notificaciones de reacciones adversas a medicamentos (RAM) recibidas por todos los profesionales sanitarios y en la que los enfermeros gozan de una situación óptima en cuanto a los conocimientos farmacológicos obtenidos y la relación de primer agente mediador con el paciente. Método. Búsqueda activa de las RAM notificadas por el personal sanitario enfermero extremeño entre el 1 de enero de 2000 hasta el 31 de diciembre de 2005 a través del sistema de información de farmacovigilancia de Extremadura. Resultados. En el Sistema Español de Farmacovigilancia se identifican 1.502 RAM notificadas por enfermeros en el territorio nacional (el 3,32% del total) y 10 RAM en Extremadura (el 0,64% del total de RAM notificadas por enfermeros). El mayor número de RAM corresponde al año 2000, el 20% del total son urticarias y el fármaco causante es el que se utiliza para la inmunización activa contra la difteria, el tétanos, la pertusis y la poliomielitis (30% del total). Según se ha notificado, el 50% corresponde al ámbito extrahospitalario. Sólo 1 caso precisó atención sanitaria en urgencias y el 40% tratamiento farmacológico para paliar los efectos de la RAM. En el 70% se evaluó la RAM como leve, y en el 30% restante fue moderada. Hay la misma proporción de varones que de mujeres, con una edad media de 37,4 años. Conclusiones. Se constata una infranotificación de RAM por parte del colectivo enfermero, influenciada por baja motivación en la notificación y desconocimiento del sistema de información de RAM

Introduction. The main aim of pharmacovigilance, a public health activity, is to communicate, collect and evaluate notifications of adverse reactions to drugs (ARD) received from health professionals. Among this collective, nurses are in an optimal position due to their knowledge of pharmacology and their role in the front line of patient care. Method. We performed a search of the ARD reported by nursing staff in Extremadura from january 1, 2000 to december 31, 2005 through the pharmacovigilance information system of Extremadura. Results. A total of 1,502 ARD were notified to the Spanish pharmacovigilance system by nurses throughout Spain (3.32% of the total) and 10 RAM by nurses from Extremadura (0.64% of the total number of RAM notified by nurses). The highest number of ARD corresponded to the year 2000, with 20% of the total being urticaria. The causative agents were vaccines against diphtheria, tetanus, pertussis and poliomyelitis (30% of the total). According to the notifiers, 50% corresponded to the extrahospital setting. Only one ARD required emergency care, while 40% of affected individuals required drug therapy to alleviate the effects of the ARD. Seventy percent of the ARD were mild, while the remainder were moderate. ARD occurred in men and women equally, and the mean age of affected individuals was 37.4 years. Conclusion. ARD are underreported by nurses, influenced by low motivation to notify these events and lack of knowledge of how they should be reported

Redes centinela sanitarias en España. Consenso para una guía de principios y métodos / Health sentinel networks in Spain. Consensus for a guide of principles and methods

Las redes centinela sanitarias han estado activas en nuestro país desde la década de los años ochenta, con variados objetivos, metodología y diferente grado de desarrollo en las comunidades autónomas donde se han implantado. La necesidad de normalizar el funcionamiento y de armonizar los indicadores ha propiciado un proyecto de investigación de redes centinela sanitarias españolas, uno de cuyos objetivos es establecer una guía de principios y métodos de trabajo. Se ha procedido a realizar un estudio con el método Delphi, en el que un panel de 23 expertos ha consensuado, en 3 fases consecutivas, la definición de red centinela, los objetivos, los principios que deben regirlas y otros aspectos relacionados con la organización y funcionamiento. En conjunto se plantearon 41 cuestiones sobre la base de un primer borrador, las cuales necesitaban un 80% de consenso en una primera fase y un 70% en la segunda. Todos los expertos participaron en la primera fase, 22 en la segunda y 20 en la tercera. Se alcanzó un consenso en 36 cuestiones en la primera fase y en 4 de las 5 restantes en la segunda. En la tercera fase se dio forma definitiva al documento de la guía. El método de consenso Delphi ha resultado extremadamente útil en la resolución de discrepancias y divergencias, obteniéndose una guía válida para redes centinela. Los expertos ajenos a los sistemas centinela del panel seleccionado aportaron una visión más extensa sobre los objetivos y la aplicabilidad de las redes centinela sanitarias en España

Since the eighties, health sentinel networks have been active in our country, but with a variety of objectives, methods and different development levels in the autonomous communities. The necessity of standardising the management and harmonising the indicators has concluded in a research project on the Spanish health sentinel networks, one of whose objectives is to establish a guide for work principles and methods. A panel of 23 experts has made a study using the Delphi method to agree, in three consecutive phases, a definition of sentinel network, the objectives and the management principles and other aspects related to the organisation and functioning. Altogether, 41 questions were gathered from a previous draft which needed 80% of consensus in the first phase and 70% in the second. All the experts participated in the first phase, 22 in the second and 20 in the third. A consensus was achieved on 36 questions in the first phase and in 4 of the remaining ones in the second. In the third phase the shape of the guide document was given. The Delphi consensus method has been extremely useful in the resolution of discrepancies and divergences. The experts who were selected outside of the sentinel networks contributed with a wider vision on the objectives and applicability of the health sentinel networks in Spain

[Disease registries in the epidemiological researching of rare diseases in Spain]. / Los registros de enfermedades en la investigacion epidemiológica de las enfermedades raras en España.

BACKGROUND: The use of tools such as disease registries poses a problem in the case of rare diseases. This study is aimed at describing the current situation concerning rare disease registries in Spain. METHODS: The information provided by two Spanish health registries directories prepared by the Spanish Health Assessment Technologies Agencies are employed, a descriptive cross-sectional study being conducted. The registries identified in these directories has been classified as: (1) "Specific rare diseases" (2) "Unspecific but with information on rare disease and (3) "Non-informative regarding rare diseases". RESULTS: The 2000 directory listed 82 registries, 15.8% of which were classified under Group 1, whilst a total of 107 registries, 16.8% in Group 1, were identified in the 2005 review. The main health registries in Group 2, by topic, were: cancer, mortality, psychiatry and nephrology. No general rare disease registries were found in the directories. CONCLUSIONS: Although few in number, health registries do exist in Spain including information on rare diseases. Areas have been identified by topic lacking registries and also information systems or registries unidentified in the sources used. Continuing efforts must be made to improve the information available on rare diseases.

Los registros de enfermedades en la investigación epidemiológica de las enfermedades raras en España / Disease registries in the epidemiological researching of rare diseases in Spain

Fundamento: En el caso de las enfermedades raras existen dificultadespara utilizar herramientas como los registros de enfermedades.El objetivo de este trabajo es describir la situación de los registrossobre enfermedades raras en España.Métodos: Se utiliza la información proporcionada por dos directoriosde registros sanitarios españoles elaborados por la AgenciaEspañola de Evaluación de Tecnologías Sanitarias, realizando unestudio descriptivo transversal. Los registros identificados en estosdirectorios se han clasificado como: 1) «Específicos de enfermedadesraras», 2) «No específicos pero con información de enfermedadesraras», y 3) «No informativos sobre enfermedades raras».Resultados: En el directorio del año 2000 aparecían 82 registros,de los que el 15,8% se clasificaron en el grupo 1, mientras que en larevisión de 2005 se identificaron 107 registros, 16,8% en el grupo 1.Las principales áreas temáticas de los registros sanitarios del grupo 2fueron el cáncer, la mortalidad, la psiquiatría y la nefrología. En losdirectorios no se ha hallado ningún registro genérico de enfermedadesraras. Conclusiones: Aunque escasos, existen registros sanitarios enEspaña con información sobre enfermedades raras. Se han identificadoáreas temáticas con carencias de registros y también registros osistemas de información no identificados en las fuentes utilizadas. Esnecesario continuar los esfuerzos por mejorar la información disponiblesobre las enfermedades raras

Background: The use of tools such as disease registries poses aproblem in the case of rare diseases. This study is aimed at describingthe current situation concerning rare disease registries inSpain.Methods: The information provided by two Spanish healthregistries directories prepared by the Spanish Health AssessmentTechnologies Agencies are employed, a descriptive cross-sectionalstudy being conducted. The registries identified in these directorieshas been classified as: 1) «Specific rare diseases» 2) «Unspecific butwith information on rare disease» and 3) «Non-informative regardingrare diseases».Results: The 2000 directory listed 82 registries, 15.8% of whichwere classified under Group 1, whilst a total of 107 registries, 16.8%in Group 1, were identified in the 2005 review. The main healthregistries in Group 2, by topic, were: cancer, mortality, psychiatryand nephrology. No general rare disease registries were found in thedirectories. Conclusions: Although few in number, health registries do existin Spain including information on rare diseases. Areas have beenidentified by topic lacking registries and also information systems orregistries unidentified in the sources used. Continuing efforts mustbe made to improve the information available on rare diseases

[Guide to the principles and methods of health sentinel networks in Spain]. / Guía de principios y métodos de las redes centinelas sanitarias en España.

Health sentinel networks are being increasingly used in the study of health-related problems. The present article aims to provide a methodological guide - designed by regional sentinel network managers and based on the results of a Delphi study - that can be used to set up and develop a health sentinel network. The main topics in the guide are the following: definition of a health sentinel network; network description: aims and structure; methods for the selection of sentinel participants; description of health processes suitable for study through this methodology: incidence, case definition, exclusion and inclusion criteria; description of the target population: the denominator for incidence rates estimates; quality indicators; periodicity of data collection; dissemination of the information: periodicity and methods, and incorporation of the participants in the decision-making process through multidisciplinary commissions. This guide aims to contribute to the development of sentinel networks in the autonomous communities by providing a common methodology, which could be highly useful when introducing new networks in Spain. Finally, we conclude that it is important to raise awareness of the concept of health sentinel networks, disseminate the information generated, and promote its use by public health administration.

[Health sentinel networks in Spain. Consensus for a guide of principles and methods]. / Redes centinela sanitarias en España. Consenso para una guía de principios y métodos.

Since the eighties, health sentinel networks have been active in our country, but with a variety of objectives, methods and different development levels in the autonomous communities. The necessity of standardising the management and harmonising the indicators has concluded in a research project on the Spanish health sentinel networks, one of whose objectives is to establish a guide for work principles and methods. A panel of 23 experts has made a study using the Delphi method to agree, in three consecutive phases, a definition of sentinel network, the objectives and the management principles and other aspects related to the organisation and functioning. Altogether, 41 questions were gathered from a previous draft which needed 80% of consensus in the first phase and 70% in the second. All the experts participated in the first phase, 22 in the second and 20 in the third. A consensus was achieved on 36 questions in the first phase and in 4 of the remaining ones in the second. In the third phase the shape of the guide document was given. The Delphi consensus method has been extremely useful in the resolution of discrepancies and divergences. The experts who were selected outside of the sentinel networks contributed with a wider vision on the objectives and applicability of the health sentinel networks in Spain.

Encuestas sobre tasas de portadores sanos de N. Meningitidis y caracterización de cepas circulantes / Survey of rates of healthy carriers of N. Meningitidis and characterisation of circulating strains

FUNDAMENTO: Durante la temporada epidémica 1.996-97 el incremento de incidencia de Enfermedad Meningocócica por N. Meningitidis serogrupo C llevó a instaurar programas de vacunación y realizar distintos estudios, entre ellos dos para conocer la prevalencia de portadores sanos que presentamos. MÉTODO: Portadores sanos en población general: encuesta transversal realizada entre marzo y mayo de 1.998, entre residentes en Extremadura. Tomamos dos grupos de edad: 0-19 años, vacunados (n=1.140) y 20 y más años (n=1.193), no vacunados. Portadores sanos en un acuartelamiento: encuesta transversal en una base militar durante mayo de 1.998 (n=619), tomando dos grupos: < 20 años (n=453) vacunados, y 20 y más años (n=166) no vacunados. RESULTADOS: Portadores sanos en población general el porcentaje de portadores para todos los serogrupos fue: grupo de 0-19 años 7’98, grupo 20 y más años 3’32, total 4’60, para serogrupo B: 4’43, 2’25 y 2’84; para C: 0’04, 0’10 y 0’08 respectivamente. Las diferencias entre ambos grupos de edad del serogrupo B y total son estadísticamente significativas, así como la mayor prevalencia del B sobre C. El subtipo de las tres muestras con aislamiento de serogrupo C fue: una cepa NT:P1.6, una 2b:P1.2, y una no pudo sub-tiparse. Una cepa no serogrupable se subtipo como 2b: P1. 5. Portadores sanos en un acuartelamiento El porcentaje de portadores para todos los serogrupos fue: < 20 años 8’43, 20 y más años 6’84, total 7’27, para serogrupo B: 4’82, 3’75 y 4’04; y para C: 0’60, 0’00 y 0’16 respectivamente. Las mayores prevalencias obtenidas en militares sobre población general mostraron diferencias estadísticamente significativas. También la prevalencia de serogrupo B es significativamente muy superior a la C. La única cepa de C aislada se subtipó 2b : p1.2,5.CONCLUSIONES: La prevalencia de portadores sanos de N. meningitidis en población general es de 4,60 por ciento, siendo mayor en el grupo de menor edad y el acuartelamiento. Muy escasa prevalencia del serogrupo C. Imposible concluir que cepa N. meningitidis serogrupo C circulaba la temporada 1.997/98 (AU)