{"id":4857,"date":"2025-03-11T15:04:47","date_gmt":"2025-03-11T15:04:47","guid":{"rendered":"https:\/\/blogemergencias.es\/index.php\/2025\/03\/11\/sistema-de-informacion-de-enfermedades-raras-de-la-comunidad-de-madrid-sierma\/"},"modified":"2025-03-11T15:04:47","modified_gmt":"2025-03-11T15:04:47","slug":"sistema-de-informacion-de-enfermedades-raras-de-la-comunidad-de-madrid-sierma","status":"publish","type":"post","link":"https:\/\/blogemergencias.es\/index.php\/2025\/03\/11\/sistema-de-informacion-de-enfermedades-raras-de-la-comunidad-de-madrid-sierma\/","title":{"rendered":"Sistema de Informaci\u00f3n de Enfermedades Raras de la Comunidad de Madrid (SIERMA)"},"content":{"rendered":"<div>\n<p>Esteban-Vasallo MD, Dom\u00ednguez-Berj\u00f3n MF, Chalco-Orrego JP, Gonz\u00e1lez Mart\u00edn\u2013Moro J. Prevalence of Leber hereditary optic neuropathy in the Community of Madrid (Spain), estimation with a capture-recapture method. Orphanet Journal of Rare Diseases. 2024;19(1):220.<\/p>\n<p><strong>Enfermedades raras. En: Informe del Estado de Salud de la Poblaci\u00f3n de la Comunidad de Madrid. 2023. Madrid: Consejer\u00eda de Sanidad, Comunidad de Madrid; 2023. Disponible en:<\/strong> <a href=\"\/servicios\/salud\/iesp-enfermedades-raras\" class=\"broken_link\">IESP &#8211; Enfermedades raras | Comunidad de Madrid<\/a><\/p>\n<p>Barrio-Cortes J, L\u00f3pez-Rodr\u00edguez J, G\u00f3mez-Gasc\u00f3n T, Rayo-G\u00f3mez A, Del Cura-Gonz\u00e1lez I, Dom\u00ednguez-Berj\u00f3n MF, et al. Prevalence and comorbidities of Sjogren\u2019s syndrome patients in the Community of Madrid: A population-based cross-sectional study. Joint Bone Spine. 2023;90(4):105544.<\/p>\n<p>Barrio-Cortes J, G\u00f3mez-Gasc\u00f3n T, Benito-S\u00e1nchez B, Dom\u00ednguez-Berj\u00f3n MF, Esteban-Vasallo MD, Chalco-Orrego JP, et al. Utilisation of primary healthcare services by Sj\u00f6gren\u2019s syndrome patients in the Community of Madrid and associated factors: a population-based cross-sectional study. Clin Exp Rheumatol. 2023;41(12):2397-408.<\/p>\n<p>Vicente Cemborain E, Aicua E, Ramalle G\u00f3mara E, Echevarr\u00eda L, Mira M, Chalco Orrego JP, et al. Vigilancia de las enfermedades raras en Espa\u00f1a: El Registro Estatal de enfermedades raras (ReeR). Revista Espa\u00f1ola de Salud P\u00fablica. 2021;(95):36.<\/p>\n<p>Moreno-Marro S, Barrachina-Bonet L, P\u00e1ramo-Rodr\u00edguez L, Alonso-Ferreira V, Guardiola-Vilarroig S, Vicente E, et al. Enfermedad de Wilson en Espa\u00f1a: validaci\u00f3n de fuentes utilizadas por los Registros de Enfermedades Raras. Gac Sanit. 2020;35(6):551-8.<\/p>\n<p>Zoni AC, Esteban-Vasallo MD, Dom\u00ednguez-Berj\u00f3n MF, Sendra J, Astray-Mochales J. Coverage and predictors of influenza vaccination in patients with cystic fibrosis in a campaign with a mobile phone text messaging intervention. Hum Vaccin Immunother. 2019;15(1):102-6.<\/p>\n<p>Esteban-Vasallo MD, Dom\u00ednguez-Berj\u00f3n MF, Garc\u00eda-Riolobos C, Zoni AC, Ar\u00e9jula Torres JL, S\u00e1nchez-Perruca L, et al. Effect of mobile phone text messaging for improving the uptake of influenza vaccination in patients with rare diseases. Vaccine. 2019;37(36):5257-64.<\/p>\n<p>Dom\u00ednguez\u2010Berj\u00f3n MF, Zoni AC, Esteban\u2010Vasallo MD, Sendra\u2010Guti\u00e9rrez J, Astray\u2010Mochales J. Main causes of hospitalization in people with Angelman syndrome. Journal of Applied Research in Intellectual Disabilities. 2018;31(3):466-9.<\/p>\n<p>Zoni AC, Dom\u00ednguez-Berj\u00f3n MF, Esteban-Vasallo MD, Sendra J, Astray-Mochales J. Epidemiology of cystic fibrosis-related diabetes in Madrid (Spain) and frequency of hospitalization. Eur J Intern Med. 2017;42:e14-5.<\/p>\n<p>DG de Salud P\u00fablica. Enfermedades poco frecuentes. En: Informe Estado de Salud de la Poblaci\u00f3n de la Comunidad de Madrid 2016. Madrid: Consejer\u00eda de Sanidad, Comunidad de Madrid; 2017. Disponible en: <a href=\"http:\/\/www.informesdesalud.sanidadmadrid.org\/\u00a0\" class=\"broken_link\">http:\/\/www.informesdesalud.sanidadmadrid.org\/\u00a0<\/a><\/p>\n<p>Zoni AC, Dom\u00ednguez Berj\u00f3n MF, Barcel\u00f3 E, Esteban Vasallo MD, Abaitua I, Jim\u00e9nez Villa J, et al. Identifying data sources for a national population-based registry: the experience of the Spanish Rare Diseases Registry. Public Health. 2015;129(3):271-5.<\/p>\n<p>Dom\u00ednguez-Berj\u00f3n MF, Esteban-Vasallo MD, Zoni AC, G\u00e8nova-Maleras R, Astray-Mochales J. Place of death and associated factors among patients with amyotrophic lateral sclerosis in Madrid (Spain). Amyotroph Lateral Scler Frontotemporal Degener. 2015;17(1-2):62-8.<\/p>\n<p>Rinc\u00f3n Carlavilla A, Gonzalez Tejedor D, Robustillo Rodela A, Cuadrado Gamarra I, Zorrilla Torras B. Mortalidad y a\u00f1os potenciales de vida perdidos por Enfermedades Raras en la Comunidad de Madrid en el periodo 1999-2003. Bolet\u00edn Epidemiol\u00f3gico de la Comunidad de Madrid. 2008;14(2):3-41.<\/p>\n<p>Gavrila Chervase D, Robustillo Rodela A, Cuadrado Gamarra I, Zorrilla Torras B. Red Epidemiol\u00f3gica de Investigaci\u00f3n En Enfermedades Raras. Estudio de la morbilidad hospitalaria por Enfermedades Raras en la Comunidad de Madrid. A\u00f1os 1999-2002. Bolet\u00edn Epidemiol\u00f3gico de la Comunidad de Madrid. 2005;11(4):3-25.<\/p>\n<\/div>\n<p><a href=\"https:\/\/www.comunidad.madrid\/servicios\/salud\/sistema-informacion-enfermedades-raras-comunidad-madrid-sierma\">source<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Esteban-Vasallo MD, Dom\u00ednguez-Berj\u00f3n MF, Chalco-Orrego JP, Gonz\u00e1lez Mart\u00edn\u2013Moro J. Prevalence of Leber hereditary optic neuropathy in the Community<\/p>\n","protected":false},"author":1,"featured_media":12677,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_bbp_topic_count":0,"_bbp_reply_count":0,"_bbp_total_topic_count":0,"_bbp_total_reply_count":0,"_bbp_voice_count":0,"_bbp_anonymous_reply_count":0,"_bbp_topic_count_hidden":0,"_bbp_reply_count_hidden":0,"_bbp_forum_subforum_count":0,"_joinchat":[],"footnotes":""},"categories":[1],"tags":[],"class_list":["post-4857","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-noticias"],"featured_image_urls":{"full":["https:\/\/i3.wp.com\/blogemergencias.es\/wp-content\/uploads\/2025\/02\/IMAGEN-ESTANDAR-BLOGEMERGENCIAS-ENTRADAS.png?w=1920&resize=1920,998&ssl=1",1920,998,false],"thumbnail":["https:\/\/i3.wp.com\/blogemergencias.es\/wp-content\/uploads\/2025\/02\/IMAGEN-ESTANDAR-BLOGEMERGENCIAS-ENTRADAS.png?w=150&resize=150,150&ssl=1",150,150,false],"medium":["https:\/\/i3.wp.com\/blogemergencias.es\/wp-content\/uploads\/2025\/02\/IMAGEN-ESTANDAR-BLOGEMERGENCIAS-ENTRADAS.png?w=300&resize=300,300&ssl=1",300,300,false],"medium_large":["https:\/\/i3.wp.com\/blogemergencias.es\/wp-content\/uploads\/2025\/02\/IMAGEN-ESTANDAR-BLOGEMERGENCIAS-ENTRADAS.png?w=768&resize=768,0&ssl=1",768,0,false],"large":["https:\/\/i3.wp.com\/blogemergencias.es\/wp-content\/uploads\/2025\/02\/IMAGEN-ESTANDAR-BLOGEMERGENCIAS-ENTRADAS.png?w=1024&resize=1024,1024&ssl=1",1024,1024,false],"1536x1536":["https:\/\/i3.wp.com\/blogemergencias.es\/wp-content\/uploads\/2025\/02\/IMAGEN-ESTANDAR-BLOGEMERGENCIAS-ENTRADAS.png?w=1536&resize=1536,1536&ssl=1",1536,1536,false],"2048x2048":["https:\/\/i3.wp.com\/blogemergencias.es\/wp-content\/uploads\/2025\/02\/IMAGEN-ESTANDAR-BLOGEMERGENCIAS-ENTRADAS.png?w=2048&resize=2048,2048&ssl=1",2048,2048,false],"morenews-large":["https:\/\/i3.wp.com\/blogemergencias.es\/wp-content\/uploads\/2025\/02\/IMAGEN-ESTANDAR-BLOGEMERGENCIAS-ENTRADAS.png?w=825&resize=825,575&ssl=1",825,575,false],"morenews-medium":["https:\/\/i3.wp.com\/blogemergencias.es\/wp-content\/uploads\/2025\/02\/IMAGEN-ESTANDAR-BLOGEMERGENCIAS-ENTRADAS.png?w=590&resize=590,410&ssl=1",590,410,false]},"author_info":{"info":["admin"]},"category_info":"<a href=\"https:\/\/blogemergencias.es\/index.php\/category\/noticias\/\" rel=\"category tag\">Noticias<\/a>","tag_info":"Noticias","comment_count":0,"_links":{"self":[{"href":"https:\/\/blogemergencias.es\/index.php\/wp-json\/wp\/v2\/posts\/4857","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/blogemergencias.es\/index.php\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/blogemergencias.es\/index.php\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/blogemergencias.es\/index.php\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/blogemergencias.es\/index.php\/wp-json\/wp\/v2\/comments?post=4857"}],"version-history":[{"count":0,"href":"https:\/\/blogemergencias.es\/index.php\/wp-json\/wp\/v2\/posts\/4857\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/blogemergencias.es\/index.php\/wp-json\/wp\/v2\/media\/12677"}],"wp:attachment":[{"href":"https:\/\/blogemergencias.es\/index.php\/wp-json\/wp\/v2\/media?parent=4857"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/blogemergencias.es\/index.php\/wp-json\/wp\/v2\/categories?post=4857"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/blogemergencias.es\/index.php\/wp-json\/wp\/v2\/tags?post=4857"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}