{"id":2891,"date":"2022-03-28T13:59:55","date_gmt":"2022-03-28T11:59:55","guid":{"rendered":"http:\/\/lupusgalicia.org\/?p=2891"},"modified":"2022-03-28T13:59:57","modified_gmt":"2022-03-28T11:59:57","slug":"espana-contara-con-el-primer-registro-de-lupus-pediatrico","status":"publish","type":"post","link":"https:\/\/lupusgalicia.org\/?p=2891","title":{"rendered":"Espa\u00f1a contar\u00e1 con el primer registro de lupus pedi\u00e1trico"},"content":{"rendered":"\n<h1 class=\"has-vivid-purple-color has-text-color wp-block-heading\">El registro Jules ha sido impulsado por el Hospital Ram\u00f3n y Cajal con la colaboraci\u00f3n de GSK<\/h1>\n\n\n\n<p class=\"has-medium-font-size wp-block-paragraph\">El proyecto, coordinado por la Fundaci\u00f3n para la Investigaci\u00f3n Biom\u00e9dica del Hospital Universitario Ram\u00f3n y Cajal, cuenta con el aval de la<strong>&nbsp;Sociedad Espa\u00f1ola de Reumatolog\u00eda Pedi\u00e1trica&nbsp;<\/strong>(Serpe), la Sociedad Espa\u00f1ola de Reumatolog\u00eda (SER) y sus respectivos grupos de trabajo, as\u00ed como con la&nbsp;<strong>colaboraci\u00f3n de GSK.&nbsp;<\/strong>El objetivo del Registro Jules, seg\u00fan se\u00f1alan GSK, es&nbsp;<strong>aumentar el conocimiento sobre el abordaje del LESj&nbsp;<\/strong>desde el punto de vista epidemiol\u00f3gico, inmunol\u00f3gico y cl\u00ednico, con el fin de mejorar el cuidado de los pacientes. La iniciativa es un estudio observacional, prospectivo y multic\u00e9ntrico que ha arrancado en septiembre de 2021.<\/p>\n\n\n\n<p class=\"has-medium-font-size wp-block-paragraph\">En este sentido, el LESj est\u00e1 considerado una&nbsp;<strong>enfermedad rar<\/strong>a ya que, aunque<strong>&nbsp;representa el 20 por ciento de los casos de lupus<\/strong>, su prevalencia oscila entre 1,89 y 25,7 casos por cada 100.000 habitantes en todo el mundo. El reducido n\u00famero de pacientes hace que existan pocos estudios en ni\u00f1os con LES, pero, apunta GSK, s\u00ed se sabe que los pacientes que viven con esta enfermedad presentan una mortalidad cuatro veces mayor que la poblaci\u00f3n general 1 y desarrollan<strong>&nbsp;cuadros de mayor gravedad&nbsp;<\/strong>que los pacientes adultos con LES, con mayor frecuencia de manifestaciones renales y neuropsiqui\u00e1tricas.<\/p>\n\n\n\n<h2 class=\"has-vivid-purple-color has-text-color has-large-font-size wp-block-heading\">Gran carencia de evidencia cient\u00edfica<\/h2>\n\n\n\n<p class=\"has-medium-font-size wp-block-paragraph\">\u00abIncluir pacientes que han empezado su cl\u00ednica en la infancia y ver la evoluci\u00f3n tanto cl\u00ednica como anal\u00edtica, as\u00ed como conocer otros datos de gran inter\u00e9s. Estos datos permitir\u00edan&nbsp;<strong>clasificar a los pacientes seg\u00fan fenotipos de riesgo para ciertas manifestaciones graves<\/strong>, como la afectaci\u00f3n renal o neurol\u00f3gica -m\u00e1s frecuentes en ni\u00f1os que en adultos- y conocer qu\u00e9 tipo de da\u00f1o acumulan los pacientes y c\u00f3mo se manejan en la vida real, as\u00ed como la visi\u00f3n de los pacientes acerca de su propia enfermedad\u00bb, ha asegurado Boteanu.<\/p>\n\n\n\n<p class=\"has-medium-font-size wp-block-paragraph\">En la actualidad, seg\u00fan GSK, existe una&nbsp;<strong>gran carencia de evidencia cient\u00edfica sobre esta patolog\u00eda<\/strong>, ya que la mayor parte proviene de la extrapolaci\u00f3n de los resultados de estudios<br>en adultos. Adem\u00e1s, el curso de la enfermedad suele ser m\u00e1s grave, lo que requiere un mayor uso de glucocorticoides e inmunosupresores, que aumentan el riesgo de sufrir efectos adversos relacionados con el tratamiento y de acumular da\u00f1o org\u00e1nico a largo plazo, lo que tiene un impacto negativo sobre la calidad de vida de los pacientes.<\/p>\n\n\n\n<p class=\"has-medium-font-size wp-block-paragraph\">En relaci\u00f3n con el abordaje terap\u00e9utico, las opciones, igual que en adultos, son limitadas, ya que existen pocos ensayos cl\u00ednicos en poblaci\u00f3n pedi\u00e1trica con lupus, siendo&nbsp;<strong>Belimumab el primer y \u00fanico medicamento biol\u00f3gico aprobado<\/strong>&nbsp;para el LES en ni\u00f1os a partir de cinco a\u00f1os.<\/p>\n\n\n\n<p class=\"has-medium-font-size wp-block-paragraph\">As\u00ed pues, el Registro JULES tendr\u00e1 car\u00e1cter nacional y se llevar\u00e1 a cabo en diversas unidades de Reumatolog\u00eda de toda Espa\u00f1a y constar\u00e1 de dos fases: una primera retrospectiva transversal, con una duraci\u00f3n de un a\u00f1o; seguida de una fase prospectiva longitudinal de tres a\u00f1os.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">En la foto: Cristina Henr\u00edquez de Luna, presidenta de GSK en Espa\u00f1a<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Noticia aparecida en <a href=\"https:\/\/www.redaccionmedica.com\/secciones\/industria\/espana-contara-con-el-primer-registro-de-lupus-pediatrico-4465\">Redacci\u00f3n M\u00e9dica<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>El registro Jules ha sido impulsado por el Hospital Ram\u00f3n y Cajal con la colaboraci\u00f3n de GSK El proyecto, coordinado por la Fundaci\u00f3n para la Investigaci\u00f3n Biom\u00e9dica del Hospital Universitario Ram\u00f3n y Cajal, cuenta con el aval de la&nbsp;Sociedad Espa\u00f1ola de Reumatolog\u00eda Pedi\u00e1trica&nbsp;(Serpe), la Sociedad Espa\u00f1ola de Reumatolog\u00eda (SER) y sus respectivos grupos de trabajo, [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":2893,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"site-sidebar-layout":"default","site-content-layout":"","ast-site-content-layout":"default","site-content-style":"default","site-sidebar-style":"default","ast-global-header-display":"","ast-banner-title-visibility":"","ast-main-header-display":"","ast-hfb-above-header-display":"","ast-hfb-below-header-display":"","ast-hfb-mobile-header-display":"","site-post-title":"","ast-breadcrumbs-content":"","ast-featured-img":"","footer-sml-layout":"","ast-disable-related-posts":"","theme-transparent-header-meta":"","adv-header-id-meta":"","stick-header-meta":"","header-above-stick-meta":"","header-main-stick-meta":"","header-below-stick-meta":"","astra-migrate-meta-layouts":"default","ast-page-background-enabled":"default","ast-page-background-meta":{"desktop":{"background-color":"var(--ast-global-color-4)","background-image":"","background-repeat":"repeat","background-position":"center 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