{"id":12576,"date":"2025-07-16T19:04:57","date_gmt":"2025-07-16T18:04:57","guid":{"rendered":"https:\/\/ring20researchsupport.co.uk\/?page_id=12576"},"modified":"2026-03-06T11:46:36","modified_gmt":"2026-03-06T11:46:36","slug":"research_status","status":"publish","type":"page","link":"https:\/\/ring20researchsupport.co.uk\/nb\/unravel\/research_status\/","title":{"rendered":"Sammendrag av Ring20-forskningsstatus"},"content":{"rendered":"<div data-elementor-type=\"wp-page\" data-elementor-id=\"12576\" class=\"elementor elementor-12576\" data-elementor-post-type=\"page\">\n\t\t\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-35d8b41 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"35d8b41\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-50 elementor-top-column elementor-element elementor-element-ea9e398\" data-id=\"ea9e398\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-3725b26 elementor-widget elementor-widget-text-editor\" data-id=\"3725b26\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t\t\t\t\t\t<p>Se webinaret v\u00e5rt for \u00e5 finne ut hva som skjer innen forskning p\u00e5 r(20), filmet 8. september 2025.<br \/><span style=\"font-size: 14px;\">Fra tidligere initiativer, til n\u00e5v\u00e6rende aktive studier og hvor vi er p\u00e5 vei inn i fremtiden ... hold deg informert.<br \/><\/span><span style=\"font-size: 14px;\">Med gode sp\u00f8rsm\u00e5l og svar med noen av medlemsfamiliene v\u00e5re \u2013 ingen sp\u00f8rsm\u00e5l er dumme!<br \/><\/span><strong><span style=\"font-size: 14px;\">Vi lytter alltid til medlemmene v\u00e5re for \u00e5 finne ut hva de \u00f8nsker \u00e5 h\u00f8re om videre, og viktigst av alt, hvilken forskning som er prioritert for dem. Dette vil bidra til \u00e5 forme tjenesteleveransen og forskningsagendaen v\u00e5r fremover.<\/span><\/strong><\/p><blockquote><p>Ingenting om oss, uten oss<\/p><\/blockquote>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-1d3df89 elementor-widget elementor-widget-spacer\" data-id=\"1d3df89\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"spacer.default\">\n\t\t\t\t\t\t\t<div class=\"elementor-spacer\">\n\t\t\t<div class=\"elementor-spacer-inner\"><\/div>\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-7e7bd9e elementor-view-default elementor-widget elementor-widget-icon\" data-id=\"7e7bd9e\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"icon.default\">\n\t\t\t\t\t\t\t<div class=\"elementor-icon-wrapper\">\n\t\t\t<div class=\"elementor-icon\">\n\t\t\t<svg aria-hidden=\"true\" class=\"e-font-icon-svg e-fas-cog\" viewbox=\"0 0 512 512\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\"><path d=\"M487.4 315.7l-42.6-24.6c4.3-23.2 4.3-47 0-70.2l42.6-24.6c4.9-2.8 7.1-8.6 5.5-14-11.1-35.6-30-67.8-54.7-94.6-3.8-4.1-10-5.1-14.8-2.3L380.8 110c-17.9-15.4-38.5-27.3-60.8-35.1V25.8c0-5.6-3.9-10.5-9.4-11.7-36.7-8.2-74.3-7.8-109.2 0-5.5 1.2-9.4 6.1-9.4 11.7V75c-22.2 7.9-42.8 19.8-60.8 35.1L88.7 85.5c-4.9-2.8-11-1.9-14.8 2.3-24.7 26.7-43.6 58.9-54.7 94.6-1.7 5.4.6 11.2 5.5 14L67.3 221c-4.3 23.2-4.3 47 0 70.2l-42.6 24.6c-4.9 2.8-7.1 8.6-5.5 14 11.1 35.6 30 67.8 54.7 94.6 3.8 4.1 10 5.1 14.8 2.3l42.6-24.6c17.9 15.4 38.5 27.3 60.8 35.1v49.2c0 5.6 3.9 10.5 9.4 11.7 36.7 8.2 74.3 7.8 109.2 0 5.5-1.2 9.4-6.1 9.4-11.7v-49.2c22.2-7.9 42.8-19.8 60.8-35.1l42.6 24.6c4.9 2.8 11 1.9 14.8-2.3 24.7-26.7 43.6-58.9 54.7-94.6 1.5-5.5-.7-11.3-5.6-14.1zM256 336c-44.1 0-80-35.9-80-80s35.9-80 80-80 80 35.9 80 80-35.9 80-80 80z\"><\/path><\/svg>\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t<div class=\"elementor-column elementor-col-50 elementor-top-column elementor-element elementor-element-7374f5c\" data-id=\"7374f5c\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-74b493c elementor-widget elementor-widget-video\" data-id=\"74b493c\" data-element_type=\"widget\" data-e-type=\"widget\" data-settings=\"{&quot;youtube_url&quot;:&quot;https:\\\/\\\/youtu.be\\\/AudFwEf_nWE&quot;,&quot;start&quot;:6,&quot;cc_load_policy&quot;:&quot;yes&quot;,&quot;video_type&quot;:&quot;youtube&quot;,&quot;controls&quot;:&quot;yes&quot;}\" data-widget_type=\"video.default\">\n\t\t\t\t\t\t\t<div class=\"elementor-wrapper elementor-open-inline\">\n\t\t\t<div class=\"elementor-video\"><\/div>\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-97f746d elementor-widget elementor-widget-text-editor\" data-id=\"97f746d\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t\t\t\t\t\t<p>For \u00e5 se denne videoen med undertekster p\u00e5 et spr\u00e5k du \u00f8nsker, velg:<\/p><ol><li>Innstillinger (nederst til h\u00f8yre p\u00e5 YouTube-skjermen)<\/li><li>undertekster<\/li><li>automatisk oversettelse<\/li><li>velg deretter \u00f8nsket spr\u00e5k fra rullegardinlisten<\/li><\/ol>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-d1acb7c elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"d1acb7c\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-7fd92c2\" data-id=\"7fd92c2\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-fd3ec22 elementor-widget elementor-widget-heading\" data-id=\"fd3ec22\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t\t<h2 class=\"elementor-heading-title elementor-size-default\">AKTIV FORSKNING<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-3fae9f5 elementor-widget elementor-widget-text-editor\" data-id=\"3fae9f5\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t\t\t\t\t\t<p>Vi har laget en liste over AKTIVE forskningsstudier\/prosjekter i r(20), inkludert en kort oversikt over studien og n\u00e5v\u00e6rende status.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-0de4c64 elementor-widget elementor-widget-accordion\" data-id=\"0de4c64\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"accordion.default\">\n\t\t\t\t\t\t\t<div class=\"elementor-accordion\">\n\t\t\t\t\t\t\t<div class=\"elementor-accordion-item\">\n\t\t\t\t\t<div id=\"elementor-tab-title-1451\" class=\"elementor-tab-title\" data-tab=\"1\" role=\"button\" aria-controls=\"elementor-tab-content-1451\" aria-expanded=\"false\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-accordion-icon elementor-accordion-icon-left\" aria-hidden=\"true\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-accordion-icon-closed\"><svg class=\"e-font-icon-svg e-fas-dna\" viewbox=\"0 0 448 512\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\"><path d=\"M.1 494.1c-1.1 9.5 6.3 17.8 15.9 17.8l32.3.1c8.1 0 14.9-5.9 16-13.9.7-4.9 1.8-11.1 3.4-18.1H380c1.6 6.9 2.9 13.2 3.5 18.1 1.1 8 7.9 14 16 13.9l32.3-.1c9.6 0 17.1-8.3 15.9-17.8-4.6-37.9-25.6-129-118.9-207.7-17.6 12.4-37.1 24.2-58.5 35.4 6.2 4.6 11.4 9.4 17 14.2H159.7c21.3-18.1 47-35.6 78.7-51.4C410.5 199.1 442.1 65.8 447.9 17.9 449 8.4 441.6.1 432 .1L399.6 0c-8.1 0-14.9 5.9-16 13.9-.7 4.9-1.8 11.1-3.4 18.1H67.8c-1.6-7-2.7-13.1-3.4-18.1-1.1-8-7.9-14-16-13.9L16.1.1C6.5.1-1 8.4.1 17.9 5.3 60.8 31.4 171.8 160 256 31.5 340.2 5.3 451.2.1 494.1zM224 219.6c-25.1-13.7-46.4-28.4-64.3-43.6h128.5c-17.8 15.2-39.1 30-64.2 43.6zM355.1 96c-5.8 10.4-12.8 21.1-21 32H114c-8.3-10.9-15.3-21.6-21-32h262.1zM92.9 416c5.8-10.4 12.8-21.1 21-32h219.4c8.3 10.9 15.4 21.6 21.2 32H92.9z\"><\/path><\/svg><\/span>\n\t\t\t\t\t\t\t\t<span class=\"elementor-accordion-icon-opened\"><svg class=\"e-font-icon-svg e-fas-minus\" viewbox=\"0 0 448 512\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\"><path d=\"M416 208H32c-17.67 0-32 14.33-32 32v32c0 17.67 14.33 32 32 32h384c17.67 0 32-14.33 32-32v-32c0-17.67-14.33-32-32-32z\"><\/path><\/svg><\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t<a class=\"elementor-accordion-title\" tabindex=\"0\">Behandlingskonsensuserkl\u00e6ring - Ken Myers, Maria Paola Canevini, Lieven Lagae, Yushi Inoue, Kentaro Tokumoto<\/a>\n\t\t\t\t\t<\/div>\n\t\t\t\t\t<div id=\"elementor-tab-content-1451\" class=\"elementor-tab-content elementor-clearfix\" data-tab=\"1\" role=\"region\" aria-labelledby=\"elementor-tab-title-1451\"><p><strong>Internasjonal<\/strong><br \/><strong>P\u00e5begynt<\/strong>januar 2025<br \/><strong>N\u00c5V\u00c6RENDE STATUS<\/strong>Venter p\u00e5 godkjenning av innsending til Epilepsi<\/p><p>En arbeidsgruppe fra v\u00e5rt vitenskapelige r\u00e5dgivende utvalg Ring20 jobber med en konsensusuttalelse om behandlinger for r(20)-syndrom for \u00e5 veilede helsepersonell n\u00e5r de behandler pasienter og for \u00e5 etterlyse mer forskning p\u00e5 dette omr\u00e5det.<\/p><p>For mer informasjon, kontakt: Ken Myers<\/p><\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t\t\t<div class=\"elementor-accordion-item\">\n\t\t\t\t\t<div id=\"elementor-tab-title-1452\" class=\"elementor-tab-title\" data-tab=\"2\" role=\"button\" aria-controls=\"elementor-tab-content-1452\" aria-expanded=\"false\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-accordion-icon elementor-accordion-icon-left\" aria-hidden=\"true\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-accordion-icon-closed\"><svg class=\"e-font-icon-svg e-fas-dna\" viewbox=\"0 0 448 512\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\"><path d=\"M.1 494.1c-1.1 9.5 6.3 17.8 15.9 17.8l32.3.1c8.1 0 14.9-5.9 16-13.9.7-4.9 1.8-11.1 3.4-18.1H380c1.6 6.9 2.9 13.2 3.5 18.1 1.1 8 7.9 14 16 13.9l32.3-.1c9.6 0 17.1-8.3 15.9-17.8-4.6-37.9-25.6-129-118.9-207.7-17.6 12.4-37.1 24.2-58.5 35.4 6.2 4.6 11.4 9.4 17 14.2H159.7c21.3-18.1 47-35.6 78.7-51.4C410.5 199.1 442.1 65.8 447.9 17.9 449 8.4 441.6.1 432 .1L399.6 0c-8.1 0-14.9 5.9-16 13.9-.7 4.9-1.8 11.1-3.4 18.1H67.8c-1.6-7-2.7-13.1-3.4-18.1-1.1-8-7.9-14-16-13.9L16.1.1C6.5.1-1 8.4.1 17.9 5.3 60.8 31.4 171.8 160 256 31.5 340.2 5.3 451.2.1 494.1zM224 219.6c-25.1-13.7-46.4-28.4-64.3-43.6h128.5c-17.8 15.2-39.1 30-64.2 43.6zM355.1 96c-5.8 10.4-12.8 21.1-21 32H114c-8.3-10.9-15.3-21.6-21-32h262.1zM92.9 416c5.8-10.4 12.8-21.1 21-32h219.4c8.3 10.9 15.4 21.6 21.2 32H92.9z\"><\/path><\/svg><\/span>\n\t\t\t\t\t\t\t\t<span class=\"elementor-accordion-icon-opened\"><svg class=\"e-font-icon-svg e-fas-minus\" viewbox=\"0 0 448 512\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\"><path d=\"M416 208H32c-17.67 0-32 14.33-32 32v32c0 17.67 14.33 32 32 32h384c17.67 0 32-14.33 32-32v-32c0-17.67-14.33-32-32-32z\"><\/path><\/svg><\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t<a class=\"elementor-accordion-title\" tabindex=\"0\">Ring20 genomstudie - Hannah Titheradge, Andrew Beggs, Storbritannia (med st\u00f8tte fra Oxford Nanopore Technologies)<\/a>\n\t\t\t\t\t<\/div>\n\t\t\t\t\t<div id=\"elementor-tab-content-1452\" class=\"elementor-tab-content elementor-clearfix\" data-tab=\"2\" role=\"region\" aria-labelledby=\"elementor-tab-title-1452\"><p><strong>Kun Storbritannia<\/strong><br \/><strong>P\u00e5begynt<\/strong>september 2025<br \/><strong>N\u00c5V\u00c6RENDE STATUS<\/strong>F\u00f8rste resultater fra sekvensering tilgjengelig, dypere analyse p\u00e5g\u00e5r<\/p><p>Denne studien s\u00f8ker personer som lever med r(20) med h\u00f8y grad av mosaikkisme. Teamet vil sekvensere genomer ved hjelp av Oxford Nanopore Technologies.<\/p><p>For mer informasjon, kontakt: Hannah Titheradge\u00a0<\/p><\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t\t\t<div class=\"elementor-accordion-item\">\n\t\t\t\t\t<div id=\"elementor-tab-title-1453\" class=\"elementor-tab-title\" data-tab=\"3\" role=\"button\" aria-controls=\"elementor-tab-content-1453\" aria-expanded=\"false\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-accordion-icon elementor-accordion-icon-left\" aria-hidden=\"true\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-accordion-icon-closed\"><svg class=\"e-font-icon-svg e-fas-dna\" viewbox=\"0 0 448 512\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\"><path d=\"M.1 494.1c-1.1 9.5 6.3 17.8 15.9 17.8l32.3.1c8.1 0 14.9-5.9 16-13.9.7-4.9 1.8-11.1 3.4-18.1H380c1.6 6.9 2.9 13.2 3.5 18.1 1.1 8 7.9 14 16 13.9l32.3-.1c9.6 0 17.1-8.3 15.9-17.8-4.6-37.9-25.6-129-118.9-207.7-17.6 12.4-37.1 24.2-58.5 35.4 6.2 4.6 11.4 9.4 17 14.2H159.7c21.3-18.1 47-35.6 78.7-51.4C410.5 199.1 442.1 65.8 447.9 17.9 449 8.4 441.6.1 432 .1L399.6 0c-8.1 0-14.9 5.9-16 13.9-.7 4.9-1.8 11.1-3.4 18.1H67.8c-1.6-7-2.7-13.1-3.4-18.1-1.1-8-7.9-14-16-13.9L16.1.1C6.5.1-1 8.4.1 17.9 5.3 60.8 31.4 171.8 160 256 31.5 340.2 5.3 451.2.1 494.1zM224 219.6c-25.1-13.7-46.4-28.4-64.3-43.6h128.5c-17.8 15.2-39.1 30-64.2 43.6zM355.1 96c-5.8 10.4-12.8 21.1-21 32H114c-8.3-10.9-15.3-21.6-21-32h262.1zM92.9 416c5.8-10.4 12.8-21.1 21-32h219.4c8.3 10.9 15.4 21.6 21.2 32H92.9z\"><\/path><\/svg><\/span>\n\t\t\t\t\t\t\t\t<span class=\"elementor-accordion-icon-opened\"><svg class=\"e-font-icon-svg e-fas-minus\" viewbox=\"0 0 448 512\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\"><path d=\"M416 208H32c-17.67 0-32 14.33-32 32v32c0 17.67 14.33 32 32 32h384c17.67 0 32-14.33 32-32v-32c0-17.67-14.33-32-32-32z\"><\/path><\/svg><\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t<a class=\"elementor-accordion-title\" tabindex=\"0\">Konsensusuttalelse om diagnose - Bill James, Rudy Roth, Mark Fitzgerald, John Barbieri, Abizairie Sanchez-Feliciano<\/a>\n\t\t\t\t\t<\/div>\n\t\t\t\t\t<div id=\"elementor-tab-content-1453\" class=\"elementor-tab-content elementor-clearfix\" data-tab=\"3\" role=\"region\" aria-labelledby=\"elementor-tab-title-1453\"><p><strong>Internasjonal<\/strong><br \/><strong>P\u00e5begynt<\/strong>januar 2025<br \/><strong>N\u00c5V\u00c6RENDE STATUS<\/strong>Utkast produsert og venter p\u00e5 gjennomgang f\u00f8r innsending<\/p><p>En arbeidsgruppe fra v\u00e5rt vitenskapelige r\u00e5dgivende utvalg ved Ring20 jobber med en konsensusuttalelse knyttet til diagnose av r(20)-syndrom for \u00e5 veilede helsepersonell n\u00e5r de diagnostiserer pasienter (spesielt rundt viktige tegn og symptomer og passende diagnostisk testing) og for \u00e5 etterlyse mer forskning p\u00e5 dette omr\u00e5det.<\/p><p>For mer informasjon, kontakt: Bill James<\/p><\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t\t\t<div class=\"elementor-accordion-item\">\n\t\t\t\t\t<div id=\"elementor-tab-title-1454\" class=\"elementor-tab-title\" data-tab=\"4\" role=\"button\" aria-controls=\"elementor-tab-content-1454\" aria-expanded=\"false\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-accordion-icon elementor-accordion-icon-left\" aria-hidden=\"true\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-accordion-icon-closed\"><svg class=\"e-font-icon-svg e-fas-dna\" viewbox=\"0 0 448 512\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\"><path d=\"M.1 494.1c-1.1 9.5 6.3 17.8 15.9 17.8l32.3.1c8.1 0 14.9-5.9 16-13.9.7-4.9 1.8-11.1 3.4-18.1H380c1.6 6.9 2.9 13.2 3.5 18.1 1.1 8 7.9 14 16 13.9l32.3-.1c9.6 0 17.1-8.3 15.9-17.8-4.6-37.9-25.6-129-118.9-207.7-17.6 12.4-37.1 24.2-58.5 35.4 6.2 4.6 11.4 9.4 17 14.2H159.7c21.3-18.1 47-35.6 78.7-51.4C410.5 199.1 442.1 65.8 447.9 17.9 449 8.4 441.6.1 432 .1L399.6 0c-8.1 0-14.9 5.9-16 13.9-.7 4.9-1.8 11.1-3.4 18.1H67.8c-1.6-7-2.7-13.1-3.4-18.1-1.1-8-7.9-14-16-13.9L16.1.1C6.5.1-1 8.4.1 17.9 5.3 60.8 31.4 171.8 160 256 31.5 340.2 5.3 451.2.1 494.1zM224 219.6c-25.1-13.7-46.4-28.4-64.3-43.6h128.5c-17.8 15.2-39.1 30-64.2 43.6zM355.1 96c-5.8 10.4-12.8 21.1-21 32H114c-8.3-10.9-15.3-21.6-21-32h262.1zM92.9 416c5.8-10.4 12.8-21.1 21-32h219.4c8.3 10.9 15.4 21.6 21.2 32H92.9z\"><\/path><\/svg><\/span>\n\t\t\t\t\t\t\t\t<span class=\"elementor-accordion-icon-opened\"><svg class=\"e-font-icon-svg e-fas-minus\" viewbox=\"0 0 448 512\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\"><path d=\"M416 208H32c-17.67 0-32 14.33-32 32v32c0 17.67 14.33 32 32 32h384c17.67 0 32-14.33 32-32v-32c0-17.67-14.33-32-32-32z\"><\/path><\/svg><\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t<a class=\"elementor-accordion-title\" tabindex=\"0\">Meg og r(20): pasientrapportert studie - Elin Alias (Ring20-praktikant). Phil Tittensor Storbritannia<\/a>\n\t\t\t\t\t<\/div>\n\t\t\t\t\t<div id=\"elementor-tab-content-1454\" class=\"elementor-tab-content elementor-clearfix\" data-tab=\"4\" role=\"region\" aria-labelledby=\"elementor-tab-title-1454\"><p><strong>INTERNASJONAL<\/strong><br \/><strong>P\u00e5begynt<\/strong>august 2023<br \/><strong>N\u00c5V\u00c6RENDE STATUS<\/strong>Utarbeidelse av innsending til publisering<\/p><p>Data ble samlet inn fra familier som lever med r(20) syndrom via semistrukturerte intervjuer, for \u00e5 fors\u00f8ke \u00e5 forst\u00e5 den bredere virkningen av \u00e5 leve med r(20) syndrom.<\/p><p>Mer informasjon om denne studien finner du her: <a href=\"https:\/\/ring20researchsupport.co.uk\/nb\/r20-me-survey\/\">https:\/\/ring20researchsupport.co.uk\/r20-me-survey\/<\/a><\/p><\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t\t\t<div class=\"elementor-accordion-item\">\n\t\t\t\t\t<div id=\"elementor-tab-title-1455\" class=\"elementor-tab-title\" data-tab=\"5\" role=\"button\" aria-controls=\"elementor-tab-content-1455\" aria-expanded=\"false\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-accordion-icon elementor-accordion-icon-left\" aria-hidden=\"true\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-accordion-icon-closed\"><svg class=\"e-font-icon-svg e-fas-dna\" viewbox=\"0 0 448 512\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\"><path d=\"M.1 494.1c-1.1 9.5 6.3 17.8 15.9 17.8l32.3.1c8.1 0 14.9-5.9 16-13.9.7-4.9 1.8-11.1 3.4-18.1H380c1.6 6.9 2.9 13.2 3.5 18.1 1.1 8 7.9 14 16 13.9l32.3-.1c9.6 0 17.1-8.3 15.9-17.8-4.6-37.9-25.6-129-118.9-207.7-17.6 12.4-37.1 24.2-58.5 35.4 6.2 4.6 11.4 9.4 17 14.2H159.7c21.3-18.1 47-35.6 78.7-51.4C410.5 199.1 442.1 65.8 447.9 17.9 449 8.4 441.6.1 432 .1L399.6 0c-8.1 0-14.9 5.9-16 13.9-.7 4.9-1.8 11.1-3.4 18.1H67.8c-1.6-7-2.7-13.1-3.4-18.1-1.1-8-7.9-14-16-13.9L16.1.1C6.5.1-1 8.4.1 17.9 5.3 60.8 31.4 171.8 160 256 31.5 340.2 5.3 451.2.1 494.1zM224 219.6c-25.1-13.7-46.4-28.4-64.3-43.6h128.5c-17.8 15.2-39.1 30-64.2 43.6zM355.1 96c-5.8 10.4-12.8 21.1-21 32H114c-8.3-10.9-15.3-21.6-21-32h262.1zM92.9 416c5.8-10.4 12.8-21.1 21-32h219.4c8.3 10.9 15.4 21.6 21.2 32H92.9z\"><\/path><\/svg><\/span>\n\t\t\t\t\t\t\t\t<span class=\"elementor-accordion-icon-opened\"><svg class=\"e-font-icon-svg e-fas-minus\" viewbox=\"0 0 448 512\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\"><path d=\"M416 208H32c-17.67 0-32 14.33-32 32v32c0 17.67 14.33 32 32 32h384c17.67 0 32-14.33 32-32v-32c0-17.67-14.33-32-32-32z\"><\/path><\/svg><\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t<a class=\"elementor-accordion-title\" tabindex=\"0\">Ring20 pasientrapportert effektstudie - Arun Soma, Rhys Thomas Newcastle University, Storbritannia<\/a>\n\t\t\t\t\t<\/div>\n\t\t\t\t\t<div id=\"elementor-tab-content-1455\" class=\"elementor-tab-content elementor-clearfix\" data-tab=\"5\" role=\"region\" aria-labelledby=\"elementor-tab-title-1455\"><p><strong>INTERNASJONAL<\/strong><br \/><strong>P\u00e5begynt<\/strong>februar 2023<br \/><strong>N\u00c5V\u00c6RENDE STATUS<\/strong>Utarbeidelse av innsending til publisering<\/p><p>Forskning publisert om ringkromosom 20 har historisk sett fokusert p\u00e5 informasjon samlet inn av leger fra medisinske journaler eller rapporter, og studier har vanligvis v\u00e6rt begrenset til et lite antall pasienter p\u00e5 et bestemt tidspunkt i hver pasients levetid. Ved \u00e5 samle erfaringer direkte fra enkeltpersoner eller deres foreldre\/omsorgspersoner \u00f8nsker vi \u00e5 se om deres erfaringer kan tilf\u00f8re ny kunnskap til det som er dokumentert om \u00e5 leve med r(20).<\/p><p>Mer informasjon om denne studien finner du her: <a href=\"https:\/\/ring20researchsupport.co.uk\/nb\/patient_survey\/\">https:\/\/ring20researchsupport.co.uk\/patient_survey\/<\/a><\/p><\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t\t\t<div class=\"elementor-accordion-item\">\n\t\t\t\t\t<div id=\"elementor-tab-title-1456\" class=\"elementor-tab-title\" data-tab=\"6\" role=\"button\" aria-controls=\"elementor-tab-content-1456\" aria-expanded=\"false\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-accordion-icon elementor-accordion-icon-left\" aria-hidden=\"true\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-accordion-icon-closed\"><svg class=\"e-font-icon-svg e-fas-dna\" viewbox=\"0 0 448 512\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\"><path d=\"M.1 494.1c-1.1 9.5 6.3 17.8 15.9 17.8l32.3.1c8.1 0 14.9-5.9 16-13.9.7-4.9 1.8-11.1 3.4-18.1H380c1.6 6.9 2.9 13.2 3.5 18.1 1.1 8 7.9 14 16 13.9l32.3-.1c9.6 0 17.1-8.3 15.9-17.8-4.6-37.9-25.6-129-118.9-207.7-17.6 12.4-37.1 24.2-58.5 35.4 6.2 4.6 11.4 9.4 17 14.2H159.7c21.3-18.1 47-35.6 78.7-51.4C410.5 199.1 442.1 65.8 447.9 17.9 449 8.4 441.6.1 432 .1L399.6 0c-8.1 0-14.9 5.9-16 13.9-.7 4.9-1.8 11.1-3.4 18.1H67.8c-1.6-7-2.7-13.1-3.4-18.1-1.1-8-7.9-14-16-13.9L16.1.1C6.5.1-1 8.4.1 17.9 5.3 60.8 31.4 171.8 160 256 31.5 340.2 5.3 451.2.1 494.1zM224 219.6c-25.1-13.7-46.4-28.4-64.3-43.6h128.5c-17.8 15.2-39.1 30-64.2 43.6zM355.1 96c-5.8 10.4-12.8 21.1-21 32H114c-8.3-10.9-15.3-21.6-21-32h262.1zM92.9 416c5.8-10.4 12.8-21.1 21-32h219.4c8.3 10.9 15.4 21.6 21.2 32H92.9z\"><\/path><\/svg><\/span>\n\t\t\t\t\t\t\t\t<span class=\"elementor-accordion-icon-opened\"><svg class=\"e-font-icon-svg e-fas-minus\" viewbox=\"0 0 448 512\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\"><path d=\"M416 208H32c-17.67 0-32 14.33-32 32v32c0 17.67 14.33 32 32 32h384c17.67 0 32-14.33 32-32v-32c0-17.67-14.33-32-32-32z\"><\/path><\/svg><\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t<a class=\"elementor-accordion-title\" tabindex=\"0\">Ring20 genomisk eksperimentstudie - Carolina Montana, Glennis Logsdon barnesykehus i Philadelphia, USA<\/a>\n\t\t\t\t\t<\/div>\n\t\t\t\t\t<div id=\"elementor-tab-content-1456\" class=\"elementor-tab-content elementor-clearfix\" data-tab=\"6\" role=\"region\" aria-labelledby=\"elementor-tab-title-1456\"><p><strong>INTERNASJONALT (rekrutterer hovedsakelig fra USA)<\/strong><br \/><strong>P\u00e5begynt<\/strong>Mai 2025<br \/><strong>N\u00c5V\u00c6RENDE STATUS<\/strong>P\u00c5 VENT \u2013 venter p\u00e5 finansiering<\/p><p>Denne studien er for tiden i pr\u00f8veinnsamlingsfasen. Finansiering tildelt av CHOP for denne studien har siden blitt omfordelt, s\u00e5 forskerteamet s\u00f8ker nye midler for \u00e5 fortsette prosjektet.\u00a0<br \/>Teamet vil karyotype alle pr\u00f8vene f\u00f8r de sendes til sekvensering, ettersom de \u00f8nsker \u00e5 velge trioer som har den h\u00f8yeste prosentandelen ringer.<\/p><p>For mer informasjon, kontakt: Carolina Montano<a href=\"mailto:montanoc@chop.edu\">montanoc@chop.edu<\/a>&gt;\u00a0<\/p><\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t\t\t<div class=\"elementor-accordion-item\">\n\t\t\t\t\t<div id=\"elementor-tab-title-1457\" class=\"elementor-tab-title\" data-tab=\"7\" role=\"button\" aria-controls=\"elementor-tab-content-1457\" aria-expanded=\"false\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-accordion-icon elementor-accordion-icon-left\" aria-hidden=\"true\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-accordion-icon-closed\"><svg class=\"e-font-icon-svg e-fas-dna\" viewbox=\"0 0 448 512\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\"><path d=\"M.1 494.1c-1.1 9.5 6.3 17.8 15.9 17.8l32.3.1c8.1 0 14.9-5.9 16-13.9.7-4.9 1.8-11.1 3.4-18.1H380c1.6 6.9 2.9 13.2 3.5 18.1 1.1 8 7.9 14 16 13.9l32.3-.1c9.6 0 17.1-8.3 15.9-17.8-4.6-37.9-25.6-129-118.9-207.7-17.6 12.4-37.1 24.2-58.5 35.4 6.2 4.6 11.4 9.4 17 14.2H159.7c21.3-18.1 47-35.6 78.7-51.4C410.5 199.1 442.1 65.8 447.9 17.9 449 8.4 441.6.1 432 .1L399.6 0c-8.1 0-14.9 5.9-16 13.9-.7 4.9-1.8 11.1-3.4 18.1H67.8c-1.6-7-2.7-13.1-3.4-18.1-1.1-8-7.9-14-16-13.9L16.1.1C6.5.1-1 8.4.1 17.9 5.3 60.8 31.4 171.8 160 256 31.5 340.2 5.3 451.2.1 494.1zM224 219.6c-25.1-13.7-46.4-28.4-64.3-43.6h128.5c-17.8 15.2-39.1 30-64.2 43.6zM355.1 96c-5.8 10.4-12.8 21.1-21 32H114c-8.3-10.9-15.3-21.6-21-32h262.1zM92.9 416c5.8-10.4 12.8-21.1 21-32h219.4c8.3 10.9 15.4 21.6 21.2 32H92.9z\"><\/path><\/svg><\/span>\n\t\t\t\t\t\t\t\t<span class=\"elementor-accordion-icon-opened\"><svg class=\"e-font-icon-svg e-fas-minus\" viewbox=\"0 0 448 512\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\"><path d=\"M416 208H32c-17.67 0-32 14.33-32 32v32c0 17.67 14.33 32 32 32h384c17.67 0 32-14.33 32-32v-32c0-17.67-14.33-32-32-32z\"><\/path><\/svg><\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t<a class=\"elementor-accordion-title\" tabindex=\"0\">UNRAVEL \u2013 muliggj\u00f8r genomisk forst\u00e5else av ringkromosom 20-syndrom \u2013 Illumina Inc Cambridge, Storbritannia<\/a>\n\t\t\t\t\t<\/div>\n\t\t\t\t\t<div id=\"elementor-tab-content-1457\" class=\"elementor-tab-content elementor-clearfix\" data-tab=\"7\" role=\"region\" aria-labelledby=\"elementor-tab-title-1457\"><p><strong>NASJONAL<\/strong> (Kun Storbritannia)<br \/><strong>P\u00e5begynt<\/strong>februar 2023<br \/><strong>N\u00c5V\u00c6RENDE STATUS<\/strong>Analyse av resultater<\/p><p>Det vitenskapelige partnerskapet vil jobbe med \u00e5 avdekke genomene til r(20)-pasienter for \u00e5 identifisere nye tilfeller og utvikle effektive diagnostiske tester for fremtiden.<br \/>Pr\u00f8ver er samlet inn via NIHR BioResource og sendt til Illumina for \u00e5 starte forskning og utvikling.<\/p><\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t\t\t<div class=\"elementor-accordion-item\">\n\t\t\t\t\t<div id=\"elementor-tab-title-1458\" class=\"elementor-tab-title\" data-tab=\"8\" role=\"button\" aria-controls=\"elementor-tab-content-1458\" aria-expanded=\"false\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-accordion-icon elementor-accordion-icon-left\" aria-hidden=\"true\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-accordion-icon-closed\"><svg class=\"e-font-icon-svg e-fas-dna\" viewbox=\"0 0 448 512\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\"><path d=\"M.1 494.1c-1.1 9.5 6.3 17.8 15.9 17.8l32.3.1c8.1 0 14.9-5.9 16-13.9.7-4.9 1.8-11.1 3.4-18.1H380c1.6 6.9 2.9 13.2 3.5 18.1 1.1 8 7.9 14 16 13.9l32.3-.1c9.6 0 17.1-8.3 15.9-17.8-4.6-37.9-25.6-129-118.9-207.7-17.6 12.4-37.1 24.2-58.5 35.4 6.2 4.6 11.4 9.4 17 14.2H159.7c21.3-18.1 47-35.6 78.7-51.4C410.5 199.1 442.1 65.8 447.9 17.9 449 8.4 441.6.1 432 .1L399.6 0c-8.1 0-14.9 5.9-16 13.9-.7 4.9-1.8 11.1-3.4 18.1H67.8c-1.6-7-2.7-13.1-3.4-18.1-1.1-8-7.9-14-16-13.9L16.1.1C6.5.1-1 8.4.1 17.9 5.3 60.8 31.4 171.8 160 256 31.5 340.2 5.3 451.2.1 494.1zM224 219.6c-25.1-13.7-46.4-28.4-64.3-43.6h128.5c-17.8 15.2-39.1 30-64.2 43.6zM355.1 96c-5.8 10.4-12.8 21.1-21 32H114c-8.3-10.9-15.3-21.6-21-32h262.1zM92.9 416c5.8-10.4 12.8-21.1 21-32h219.4c8.3 10.9 15.4 21.6 21.2 32H92.9z\"><\/path><\/svg><\/span>\n\t\t\t\t\t\t\t\t<span class=\"elementor-accordion-icon-opened\"><svg class=\"e-font-icon-svg e-fas-minus\" viewbox=\"0 0 448 512\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\"><path d=\"M416 208H32c-17.67 0-32 14.33-32 32v32c0 17.67 14.33 32 32 32h384c17.67 0 32-14.33 32-32v-32c0-17.67-14.33-32-32-32z\"><\/path><\/svg><\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t<a class=\"elementor-accordion-title\" tabindex=\"0\">SUDEP-risiko og -styring i r(20) - Philippe Ryvlin, Alex Grundmann Sveits\/Storbritannia<\/a>\n\t\t\t\t\t<\/div>\n\t\t\t\t\t<div id=\"elementor-tab-content-1458\" class=\"elementor-tab-content elementor-clearfix\" data-tab=\"8\" role=\"region\" aria-labelledby=\"elementor-tab-title-1458\"><p><strong>Internasjonal<\/strong><br \/><strong>P\u00e5begynt<\/strong>: TBA<br \/><strong>N\u00c5V\u00c6RENDE STATUS<\/strong>Planlegging<\/p><p>Denne studien har som m\u00e5l \u00e5 f\u00e5 en forst\u00e5else av SUDEP-bevissthet og d\u00f8delighetsrisiko for personer som lever med r(20)-syndrom. Funnene er planlagt \u00e5 bli skrevet i en publikasjon.<\/p><p>For mer informasjon, kontakt:<\/p><\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-6e01bf4 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"6e01bf4\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-3ab6dda\" data-id=\"3ab6dda\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-f1b47a4 elementor-widget elementor-widget-heading\" data-id=\"f1b47a4\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t\t<h2 class=\"elementor-heading-title elementor-size-default\">NYLIG AVSLUTTENDE FORSKNING<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-f5c7d74 elementor-widget elementor-widget-text-editor\" data-id=\"f5c7d74\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t\t\t\t\t\t<p>Vi har laget en liste over nylig fullf\u00f8rte forskningsstudier\/prosjekter i r(20), inkludert en kort oversikt over studien og n\u00e5v\u00e6rende status.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-ee68e7b elementor-widget elementor-widget-accordion\" data-id=\"ee68e7b\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"accordion.default\">\n\t\t\t\t\t\t\t<div class=\"elementor-accordion\">\n\t\t\t\t\t\t\t<div class=\"elementor-accordion-item\">\n\t\t\t\t\t<div id=\"elementor-tab-title-2491\" class=\"elementor-tab-title\" data-tab=\"1\" role=\"button\" aria-controls=\"elementor-tab-content-2491\" aria-expanded=\"false\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-accordion-icon elementor-accordion-icon-left\" aria-hidden=\"true\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-accordion-icon-closed\"><svg class=\"e-font-icon-svg e-fas-dna\" viewbox=\"0 0 448 512\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\"><path d=\"M.1 494.1c-1.1 9.5 6.3 17.8 15.9 17.8l32.3.1c8.1 0 14.9-5.9 16-13.9.7-4.9 1.8-11.1 3.4-18.1H380c1.6 6.9 2.9 13.2 3.5 18.1 1.1 8 7.9 14 16 13.9l32.3-.1c9.6 0 17.1-8.3 15.9-17.8-4.6-37.9-25.6-129-118.9-207.7-17.6 12.4-37.1 24.2-58.5 35.4 6.2 4.6 11.4 9.4 17 14.2H159.7c21.3-18.1 47-35.6 78.7-51.4C410.5 199.1 442.1 65.8 447.9 17.9 449 8.4 441.6.1 432 .1L399.6 0c-8.1 0-14.9 5.9-16 13.9-.7 4.9-1.8 11.1-3.4 18.1H67.8c-1.6-7-2.7-13.1-3.4-18.1-1.1-8-7.9-14-16-13.9L16.1.1C6.5.1-1 8.4.1 17.9 5.3 60.8 31.4 171.8 160 256 31.5 340.2 5.3 451.2.1 494.1zM224 219.6c-25.1-13.7-46.4-28.4-64.3-43.6h128.5c-17.8 15.2-39.1 30-64.2 43.6zM355.1 96c-5.8 10.4-12.8 21.1-21 32H114c-8.3-10.9-15.3-21.6-21-32h262.1zM92.9 416c5.8-10.4 12.8-21.1 21-32h219.4c8.3 10.9 15.4 21.6 21.2 32H92.9z\"><\/path><\/svg><\/span>\n\t\t\t\t\t\t\t\t<span class=\"elementor-accordion-icon-opened\"><svg class=\"e-font-icon-svg e-fas-minus\" viewbox=\"0 0 448 512\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\"><path d=\"M416 208H32c-17.67 0-32 14.33-32 32v32c0 17.67 14.33 32 32 32h384c17.67 0 32-14.33 32-32v-32c0-17.67-14.33-32-32-32z\"><\/path><\/svg><\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t<a class=\"elementor-accordion-title\" tabindex=\"0\">Ring20 VNS-studie (case-serie) - Ken Myers, Ariane Lajoie Montreal Children&#039;s Hospital\/McGill University, CANADA<\/a>\n\t\t\t\t\t<\/div>\n\t\t\t\t\t<div id=\"elementor-tab-content-2491\" class=\"elementor-tab-content elementor-clearfix\" data-tab=\"1\" role=\"region\" aria-labelledby=\"elementor-tab-title-2491\"><p><strong>INTERNASJONAL<\/strong><br \/><strong>P\u00e5begynt<\/strong>februar 2025 <strong>Fullf\u00f8rt<\/strong>august 2025<br \/><strong>N\u00c5V\u00c6RENDE STATUS<\/strong>Sammendrag godkjent av Epilepsia<\/p><p><a href=\"https:\/\/pubmed.ncbi.nlm.nih.gov\/40876406\/\">Lajoie A, Dufresne D, Hrazdil C, Riou \u00c9, Myers KA. <strong>Respons p\u00e5 vagusnervestimulering hos personer med ringkromosom 20.<\/strong> Beslag. 2025 nov;132:13-19. doi: 10.1016\/j.seizure.2025.08.022. Epub 2025 17. aug. PMID: 40876406.<\/a><\/p><p><em>\u00abRingkromosom 20 er et sjeldent genetisk syndrom karakterisert ved epilepsi, intellektuell funksjonshemming og andre nevroutviklingsavvik. Anfall i ringkromosom 20 er ofte medikamentresistente og svekkende. For pasienter med medikamentresistent epilepsi vurderes ofte ikke-medisinske alternativer. Effekten av disse intervensjonene er imidlertid ikke godt forst\u00e5tt. Vi unders\u00f8kte nytten av vagusnervestimulering hos personer med ringkromosom 20 i denne retrospektive kasusserien. Pasientene ble identifisert fra v\u00e5re forsknings-\/kliniske databaser, og med hjelp fra en pasientst\u00f8ttegruppe. Pasienter og\/eller omsorgspersoner ble intervjuet via telefon- eller videotelekonferanse. Dataene som ble samlet inn inkluderte demografi, epilepsiegenskaper og respons p\u00e5 medisinske og ikke-medisinske behandlinger, inkludert vagusnervestimulering. Fjorten pasienter ble inkludert i studien. 11\/14 rapporterte en viss forbedring i epilepsi etter implantasjon av vagusnervestimulator, inkludert fem med redusert anfallsfrekvens, tre med kortere anfallsvarighet, tre med reduksjon eller eliminering av ikke-konvulsiv status epilepticus eller spesifikke anfallstyper, to med redusert behov for redningsmedisinering og to kortere post-iktale tegn\/symptomer.\u00bb To pasienter ble rapportert \u00e5 ha forbedret kognitiv funksjon og \u00e9n en reduksjon i aggressiv atferd. Totalt sett ser vagusnervestimulering ut til \u00e5 v\u00e6re en effektiv behandling for noen pasienter med ringkromosom 20 og medikamentresistent epilepsi.<\/em><br \/>Resultatene skal presenteres p\u00e5 en konferanse snart.<\/p><p>For mer informasjon, kontakt: Kenneth Myers, Dr.<a href=\"mailto:kenneth.myers@mcgill.ca\">kenneth.myers@mcgill.ca<\/a>&gt;<\/p><\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-c0ac7b8 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"c0ac7b8\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-50 elementor-top-column elementor-element elementor-element-cbcfea9\" data-id=\"cbcfea9\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-55f092f elementor-widget elementor-widget-image\" data-id=\"55f092f\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"image.default\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<img fetchpriority=\"high\" decoding=\"async\" width=\"1024\" height=\"576\" src=\"https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2021\/04\/Research-Strategy-1024x576.jpg\" class=\"attachment-large size-large wp-image-4588\" alt=\"\" srcset=\"https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2021\/04\/Research-Strategy-1024x576.jpg.webp 1024w, https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2021\/04\/Research-Strategy-300x169.jpg.webp 300w, https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2021\/04\/Research-Strategy-768x432.jpg.webp 768w, https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2021\/04\/Research-Strategy-16x9.jpg.webp 16w, https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2021\/04\/Research-Strategy-600x338.jpg.webp 600w, https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2021\/04\/Research-Strategy.jpg.webp 1280w\" sizes=\"(max-width: 1024px) 100vw, 1024px\" \/>\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t<div class=\"elementor-column elementor-col-50 elementor-top-column elementor-element elementor-element-a5e771c\" data-id=\"a5e771c\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-772ccee elementor-widget elementor-widget-text-editor\" data-id=\"772ccee\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t\t\t\t\t\t<p>Vi er i aktive diskusjoner med ulike genomsekvenseringsselskaper om hvordan de kan hjelpe oss med \u00e5 identifisere den\/de genomiske endringen(e) som for\u00e5rsaker ringkromosomet. Det er viktig \u00e5 finne svarene p\u00e5 dette, ettersom ringen ikke er en fullstendig diagnose i seg selv.<\/p><p>\u00c5 avdekke den genomiske forandringen som har for\u00e5rsaket at endene av kromosomene har klistret seg sammen, kan hjelpe oss med \u00e5 <strong><em>gj\u00f8re diagnosen enklere<\/em><\/strong> og <strong><em>finne mer effektive behandlinger<\/em><\/strong>.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-b9699ac elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"b9699ac\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-4167f57\" data-id=\"4167f57\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-58af9b4 elementor-widget elementor-widget-text-editor\" data-id=\"58af9b4\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t\t\t\t\t\t<h2>Mangler grunnleggende vitenskapelig kunnskap<\/h2>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-146564d elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"146564d\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-20 elementor-top-column elementor-element elementor-element-23b442d\" data-id=\"23b442d\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-7ec1246 elementor-view-default elementor-widget elementor-widget-icon\" data-id=\"7ec1246\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"icon.default\">\n\t\t\t\t\t\t\t<div class=\"elementor-icon-wrapper\">\n\t\t\t<div class=\"elementor-icon\">\n\t\t\t<svg aria-hidden=\"true\" class=\"e-font-icon-svg e-fas-bacteria\" viewbox=\"0 0 640 512\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\"><path d=\"M272.35,226.4A17.71,17.71,0,0,0,281.46,203l-4-9.08a121.29,121.29,0,0,1,12.36-3.08A83.34,83.34,0,0,0,323.57,177l10,9a17.76,17.76,0,1,0,23.92-26.27l-9.72-8.76a83.12,83.12,0,0,0,11.65-48.18l11.85-3.51a17.73,17.73,0,1,0-10.15-34l-11.34,3.36a84,84,0,0,0-36.38-35.57l2.84-10.85a17.8,17.8,0,0,0-34.47-8.93l-2.82,10.78a83.25,83.25,0,0,0-16.74,1.1C250.83,27,240,30.22,229.1,33.39l-3.38-9.46a17.8,17.8,0,0,0-33.56,11.89l3.49,9.8a286.74,286.74,0,0,0-43.94,23.57l-6.32-8.43a17.9,17.9,0,0,0-24.94-3.6A17.69,17.69,0,0,0,116.84,82l6.45,8.61a286.59,286.59,0,0,0-34.95,35.33l-8.82-6.42a17.84,17.84,0,0,0-24.89,3.86,17.66,17.66,0,0,0,3.88,24.77l8.88,6.47a286.6,286.6,0,0,0-23,43.91l-10.48-3.59a17.73,17.73,0,1,0-11.59,33.52L32.67,232c-2.79,10-5.79,19.84-7.52,30.22a83.16,83.16,0,0,0-.82,19l-11.58,3.43a17.73,17.73,0,1,0,10.13,34l11.27-3.33a83.51,83.51,0,0,0,36.39,35.43l-2.88,11.06a17.81,17.81,0,0,0,34.48,8.92l2.87-11c1,0,2.07.26,3.1.26a83.39,83.39,0,0,0,45.65-13.88l8.59,8.8a17.77,17.77,0,0,0,25.56-24.7l-9.14-9.37a83.41,83.41,0,0,0,12.08-31.05,119.08,119.08,0,0,1,3.87-15.53l9,4.22a17.74,17.74,0,1,0,15.15-32.09l-8.8-4.11c.67-1,1.2-2.08,1.9-3.05a119.89,119.89,0,0,1,7.87-9.41,121.73,121.73,0,0,1,11.65-11.4,119.49,119.49,0,0,1,9.94-7.82c1.12-.77,2.32-1.42,3.47-2.15l3.92,8.85a17.86,17.86,0,0,0,16.32,10.58A18.14,18.14,0,0,0,272.35,226.4ZM128,256a32,32,0,1,1,32-32A32,32,0,0,1,128,256Zm80-96a16,16,0,1,1,16-16A16,16,0,0,1,208,160Zm431.26,45.3a17.79,17.79,0,0,0-17.06-12.69,17.55,17.55,0,0,0-5.08.74l-11.27,3.33a83.61,83.61,0,0,0-36.39-35.43l2.88-11.06a17.81,17.81,0,0,0-34.48-8.91l-2.87,11c-1,0-2.07-.26-3.1-.26a83.32,83.32,0,0,0-45.65,13.89l-8.59-8.81a17.77,17.77,0,0,0-25.56,24.7l9.14,9.37a83.28,83.28,0,0,0-12.08,31.06,119.34,119.34,0,0,1-3.87,15.52l-9-4.22a17.74,17.74,0,1,0-15.15,32.09l8.8,4.11c-.67,1-1.2,2.08-1.89,3.05a117.71,117.71,0,0,1-7.94,9.47,119,119,0,0,1-11.57,11.33,121.59,121.59,0,0,1-10,7.83c-1.12.77-2.32,1.42-3.47,2.15l-3.92-8.85a17.86,17.86,0,0,0-16.32-10.58,18.14,18.14,0,0,0-7.18,1.5A17.71,17.71,0,0,0,358.54,309l4,9.08a118.71,118.71,0,0,1-12.36,3.08,83.34,83.34,0,0,0-33.77,13.9l-10-9a17.77,17.77,0,1,0-23.92,26.28l9.72,8.75a83.12,83.12,0,0,0-11.65,48.18l-11.86,3.51a17.73,17.73,0,1,0,10.16,34l11.34-3.36A84,84,0,0,0,326.61,479l-2.84,10.85a17.8,17.8,0,0,0,34.47,8.93L361.06,488a83.3,83.3,0,0,0,16.74-1.1c11.37-1.89,22.24-5.07,33.1-8.24l3.38,9.46a17.8,17.8,0,0,0,33.56-11.89l-3.49-9.79a287.66,287.66,0,0,0,43.94-23.58l6.32,8.43a17.88,17.88,0,0,0,24.93,3.6A17.67,17.67,0,0,0,523.16,430l-6.45-8.61a287.37,287.37,0,0,0,34.95-35.34l8.82,6.42a17.76,17.76,0,1,0,21-28.63l-8.88-6.46a287.17,287.17,0,0,0,23-43.92l10.48,3.59a17.73,17.73,0,1,0,11.59-33.52L607.33,280c2.79-10,5.79-19.84,7.52-30.21a83.27,83.27,0,0,0,.82-19.05l11.58-3.43A17.7,17.7,0,0,0,639.26,205.3ZM416,416a32,32,0,1,1,32-32A32,32,0,0,1,416,416Z\"><\/path><\/svg>\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-fdaabdd elementor-widget elementor-widget-heading\" data-id=\"fdaabdd\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t\t<h2 class=\"elementor-heading-title elementor-size-default\">Ingen mobilmodeller<\/h2>\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t<div class=\"elementor-column elementor-col-20 elementor-top-column elementor-element elementor-element-d0b515c\" data-id=\"d0b515c\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-ab0390a elementor-view-default elementor-widget elementor-widget-icon\" data-id=\"ab0390a\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"icon.default\">\n\t\t\t\t\t\t\t<div class=\"elementor-icon-wrapper\">\n\t\t\t<div class=\"elementor-icon\">\n\t\t\t<svg aria-hidden=\"true\" class=\"e-font-icon-svg e-fas-dog\" viewbox=\"0 0 576 512\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\"><path d=\"M298.06,224,448,277.55V496a16,16,0,0,1-16,16H368a16,16,0,0,1-16-16V384H192V496a16,16,0,0,1-16,16H112a16,16,0,0,1-16-16V282.09C58.84,268.84,32,233.66,32,192a32,32,0,0,1,64,0,32.06,32.06,0,0,0,32,32ZM544,112v32a64,64,0,0,1-64,64H448v35.58L320,197.87V48c0-14.25,17.22-21.39,27.31-11.31L374.59,64h53.63c10.91,0,23.75,7.92,28.62,17.69L464,96h64A16,16,0,0,1,544,112Zm-112,0a16,16,0,1,0-16,16A16,16,0,0,0,432,112Z\"><\/path><\/svg>\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-345769e elementor-widget elementor-widget-heading\" data-id=\"345769e\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t\t<h2 class=\"elementor-heading-title elementor-size-default\">Ingen DYREMODELLER<\/h2>\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t<div class=\"elementor-column elementor-col-20 elementor-top-column elementor-element elementor-element-0a9e6dd\" data-id=\"0a9e6dd\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-0f85d15 elementor-view-default elementor-widget elementor-widget-icon\" data-id=\"0f85d15\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"icon.default\">\n\t\t\t\t\t\t\t<div class=\"elementor-icon-wrapper\">\n\t\t\t<div class=\"elementor-icon\">\n\t\t\t<svg aria-hidden=\"true\" class=\"e-font-icon-svg e-fas-bullseye\" viewbox=\"0 0 496 512\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\"><path d=\"M248 8C111.03 8 0 119.03 0 256s111.03 248 248 248 248-111.03 248-248S384.97 8 248 8zm0 432c-101.69 0-184-82.29-184-184 0-101.69 82.29-184 184-184 101.69 0 184 82.29 184 184 0 101.69-82.29 184-184 184zm0-312c-70.69 0-128 57.31-128 128s57.31 128 128 128 128-57.31 128-128-57.31-128-128-128zm0 192c-35.29 0-64-28.71-64-64s28.71-64 64-64 64 28.71 64 64-28.71 64-64 64z\"><\/path><\/svg>\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-ef87db1 elementor-widget elementor-widget-heading\" data-id=\"ef87db1\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t\t<h2 class=\"elementor-heading-title elementor-size-default\">Ingen MOLEKYL\u00c6RE M\u00c5L<\/h2>\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t<div class=\"elementor-column elementor-col-20 elementor-top-column elementor-element elementor-element-2f3137d\" data-id=\"2f3137d\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-0aa87b6 elementor-view-default elementor-widget elementor-widget-icon\" data-id=\"0aa87b6\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"icon.default\">\n\t\t\t\t\t\t\t<div class=\"elementor-icon-wrapper\">\n\t\t\t<div class=\"elementor-icon\">\n\t\t\t<svg aria-hidden=\"true\" class=\"e-font-icon-svg e-fas-pills\" viewbox=\"0 0 576 512\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\"><path d=\"M112 32C50.1 32 0 82.1 0 144v224c0 61.9 50.1 112 112 112s112-50.1 112-112V144c0-61.9-50.1-112-112-112zm48 224H64V144c0-26.5 21.5-48 48-48s48 21.5 48 48v112zm139.7-29.7c-3.5-3.5-9.4-3.1-12.3.8-45.3 62.5-40.4 150.1 15.9 206.4 56.3 56.3 143.9 61.2 206.4 15.9 4-2.9 4.3-8.8.8-12.3L299.7 226.3zm229.8-19c-56.3-56.3-143.9-61.2-206.4-15.9-4 2.9-4.3 8.8-.8 12.3l210.8 210.8c3.5 3.5 9.4 3.1 12.3-.8 45.3-62.6 40.5-150.1-15.9-206.4z\"><\/path><\/svg>\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-cb2149a elementor-widget elementor-widget-heading\" data-id=\"cb2149a\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t\t<h2 class=\"elementor-heading-title elementor-size-default\">Ingen kliniske studier<\/h2>\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t<div class=\"elementor-column elementor-col-20 elementor-top-column elementor-element elementor-element-e15905c\" data-id=\"e15905c\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-44f4007 elementor-view-default elementor-widget elementor-widget-icon\" data-id=\"44f4007\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"icon.default\">\n\t\t\t\t\t\t\t<div class=\"elementor-icon-wrapper\">\n\t\t\t<div class=\"elementor-icon\">\n\t\t\t<svg aria-hidden=\"true\" class=\"e-font-icon-svg e-fas-vial\" viewbox=\"0 0 480 512\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\"><path d=\"M477.7 186.1L309.5 18.3c-3.1-3.1-8.2-3.1-11.3 0l-34 33.9c-3.1 3.1-3.1 8.2 0 11.3l11.2 11.1L33 316.5c-38.8 38.7-45.1 102-9.4 143.5 20.6 24 49.5 36 78.4 35.9 26.4 0 52.8-10 72.9-30.1l246.3-245.7 11.2 11.1c3.1 3.1 8.2 3.1 11.3 0l34-33.9c3.1-3 3.1-8.1 0-11.2zM318 256H161l148-147.7 78.5 78.3L318 256z\"><\/path><\/svg>\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-244c41e elementor-widget elementor-widget-heading\" data-id=\"244c41e\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t\t<h2 class=\"elementor-heading-title elementor-size-default\">Ingen gjenbruk av legemidler<\/h2>\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-d8ade10 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"d8ade10\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-d557105\" data-id=\"d557105\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-a72b322 elementor-widget elementor-widget-text-editor\" data-id=\"a72b322\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t\t\t\t\t\t<p style=\"text-align: center;\">Vi \u00f8nsker \u00e5 utforske muligheten for \u00e5 kunne lage iPS-celler for ringkromosom 20, <br \/>slik at vi kan ha en cellemodell for nye behandlingseksperimenter.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-ea68afb elementor-widget elementor-widget-text-editor\" data-id=\"ea68afb\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t\t\t\t\t\t<h2>Mangler grunnleggende datainnsamling<\/h2>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-ca269a3 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"ca269a3\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-25 elementor-top-column elementor-element elementor-element-635860b\" data-id=\"635860b\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-f263faa elementor-view-default elementor-widget elementor-widget-icon\" data-id=\"f263faa\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"icon.default\">\n\t\t\t\t\t\t\t<div class=\"elementor-icon-wrapper\">\n\t\t\t<div class=\"elementor-icon\">\n\t\t\t<svg aria-hidden=\"true\" class=\"e-font-icon-svg e-fas-clipboard-list\" viewbox=\"0 0 384 512\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\"><path d=\"M336 64h-80c0-35.3-28.7-64-64-64s-64 28.7-64 64H48C21.5 64 0 85.5 0 112v352c0 26.5 21.5 48 48 48h288c26.5 0 48-21.5 48-48V112c0-26.5-21.5-48-48-48zM96 424c-13.3 0-24-10.7-24-24s10.7-24 24-24 24 10.7 24 24-10.7 24-24 24zm0-96c-13.3 0-24-10.7-24-24s10.7-24 24-24 24 10.7 24 24-10.7 24-24 24zm0-96c-13.3 0-24-10.7-24-24s10.7-24 24-24 24 10.7 24 24-10.7 24-24 24zm96-192c13.3 0 24 10.7 24 24s-10.7 24-24 24-24-10.7-24-24 10.7-24 24-24zm128 368c0 4.4-3.6 8-8 8H168c-4.4 0-8-3.6-8-8v-16c0-4.4 3.6-8 8-8h144c4.4 0 8 3.6 8 8v16zm0-96c0 4.4-3.6 8-8 8H168c-4.4 0-8-3.6-8-8v-16c0-4.4 3.6-8 8-8h144c4.4 0 8 3.6 8 8v16zm0-96c0 4.4-3.6 8-8 8H168c-4.4 0-8-3.6-8-8v-16c0-4.4 3.6-8 8-8h144c4.4 0 8 3.6 8 8v16z\"><\/path><\/svg>\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-283cfe5 elementor-widget elementor-widget-heading\" data-id=\"283cfe5\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t\t<h2 class=\"elementor-heading-title elementor-size-default\">Nei <br>PASIENTREGISTER<\/h2>\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t<div class=\"elementor-column elementor-col-25 elementor-top-column elementor-element elementor-element-aa94a62\" data-id=\"aa94a62\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-e4f547e elementor-view-default elementor-widget elementor-widget-icon\" data-id=\"e4f547e\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"icon.default\">\n\t\t\t\t\t\t\t<div class=\"elementor-icon-wrapper\">\n\t\t\t<div class=\"elementor-icon\">\n\t\t\t<svg aria-hidden=\"true\" class=\"e-font-icon-svg e-fas-users\" viewbox=\"0 0 640 512\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\"><path d=\"M96 224c35.3 0 64-28.7 64-64s-28.7-64-64-64-64 28.7-64 64 28.7 64 64 64zm448 0c35.3 0 64-28.7 64-64s-28.7-64-64-64-64 28.7-64 64 28.7 64 64 64zm32 32h-64c-17.6 0-33.5 7.1-45.1 18.6 40.3 22.1 68.9 62 75.1 109.4h66c17.7 0 32-14.3 32-32v-32c0-35.3-28.7-64-64-64zm-256 0c61.9 0 112-50.1 112-112S381.9 32 320 32 208 82.1 208 144s50.1 112 112 112zm76.8 32h-8.3c-20.8 10-43.9 16-68.5 16s-47.6-6-68.5-16h-8.3C179.6 288 128 339.6 128 403.2V432c0 26.5 21.5 48 48 48h288c26.5 0 48-21.5 48-48v-28.8c0-63.6-51.6-115.2-115.2-115.2zm-223.7-13.4C161.5 263.1 145.6 256 128 256H64c-35.3 0-64 28.7-64 64v32c0 17.7 14.3 32 32 32h65.9c6.3-47.4 34.9-87.3 75.2-109.4z\"><\/path><\/svg>\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-974bb10 elementor-widget elementor-widget-heading\" data-id=\"974bb10\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t\t<h2 class=\"elementor-heading-title elementor-size-default\">Nei <br>NATURHISTORIE<\/h2>\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t<div class=\"elementor-column elementor-col-25 elementor-top-column elementor-element elementor-element-ee2143f\" data-id=\"ee2143f\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-76c45f2 elementor-view-default elementor-widget elementor-widget-icon\" data-id=\"76c45f2\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"icon.default\">\n\t\t\t\t\t\t\t<div class=\"elementor-icon-wrapper\">\n\t\t\t<div class=\"elementor-icon\">\n\t\t\t<svg aria-hidden=\"true\" class=\"e-font-icon-svg e-fas-database\" viewbox=\"0 0 448 512\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\"><path d=\"M448 73.143v45.714C448 159.143 347.667 192 224 192S0 159.143 0 118.857V73.143C0 32.857 100.333 0 224 0s224 32.857 224 73.143zM448 176v102.857C448 319.143 347.667 352 224 352S0 319.143 0 278.857V176c48.125 33.143 136.208 48.572 224 48.572S399.874 209.143 448 176zm0 160v102.857C448 479.143 347.667 512 224 512S0 479.143 0 438.857V336c48.125 33.143 136.208 48.572 224 48.572S399.874 369.143 448 336z\"><\/path><\/svg>\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-7198d23 elementor-widget__width-initial elementor-widget elementor-widget-heading\" data-id=\"7198d23\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t\t<h2 class=\"elementor-heading-title elementor-size-default\">Nei <br>                  OMICS-DATA<\/h2>\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t<div class=\"elementor-column elementor-col-25 elementor-top-column elementor-element elementor-element-8b3d719\" data-id=\"8b3d719\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-80b28c9 elementor-view-default elementor-widget elementor-widget-icon\" data-id=\"80b28c9\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"icon.default\">\n\t\t\t\t\t\t\t<div class=\"elementor-icon-wrapper\">\n\t\t\t<div class=\"elementor-icon\">\n\t\t\t<svg aria-hidden=\"true\" class=\"e-font-icon-svg e-fas-brain\" viewbox=\"0 0 576 512\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\"><path d=\"M208 0c-29.9 0-54.7 20.5-61.8 48.2-.8 0-1.4-.2-2.2-.2-35.3 0-64 28.7-64 64 0 4.8.6 9.5 1.7 14C52.5 138 32 166.6 32 200c0 12.6 3.2 24.3 8.3 34.9C16.3 248.7 0 274.3 0 304c0 33.3 20.4 61.9 49.4 73.9-.9 4.6-1.4 9.3-1.4 14.1 0 39.8 32.2 72 72 72 4.1 0 8.1-.5 12-1.2 9.6 28.5 36.2 49.2 68 49.2 39.8 0 72-32.2 72-72V64c0-35.3-28.7-64-64-64zm368 304c0-29.7-16.3-55.3-40.3-69.1 5.2-10.6 8.3-22.3 8.3-34.9 0-33.4-20.5-62-49.7-74 1-4.5 1.7-9.2 1.7-14 0-35.3-28.7-64-64-64-.8 0-1.5.2-2.2.2C422.7 20.5 397.9 0 368 0c-35.3 0-64 28.6-64 64v376c0 39.8 32.2 72 72 72 31.8 0 58.4-20.7 68-49.2 3.9.7 7.9 1.2 12 1.2 39.8 0 72-32.2 72-72 0-4.8-.5-9.5-1.4-14.1 29-12 49.4-40.6 49.4-73.9z\"><\/path><\/svg>\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-feffd18 elementor-widget elementor-widget-heading\" data-id=\"feffd18\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t\t<h2 class=\"elementor-heading-title elementor-size-default\">Ingen biomark\u00f8rer<\/h2>\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-2ee166b elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"2ee166b\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-296d0a3\" data-id=\"296d0a3\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-e9fc693 elementor-widget elementor-widget-spacer\" data-id=\"e9fc693\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"spacer.default\">\n\t\t\t\t\t\t\t<div class=\"elementor-spacer\">\n\t\t\t<div class=\"elementor-spacer-inner\"><\/div>\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-9aeb792 elementor-widget elementor-widget-text-editor\" data-id=\"9aeb792\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t\t\t\t\t\t<h2>INGEN ANBEFALT BEHANDLINGER<\/h2>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-b7b7c55 elementor-widget elementor-widget-image\" data-id=\"b7b7c55\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"image.default\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<img decoding=\"async\" width=\"1024\" height=\"721\" src=\"https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2022\/01\/Evolution-of-genetic-testing_updated-1024x721.jpg\" class=\"attachment-large size-large wp-image-9087\" alt=\"\" srcset=\"https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2022\/01\/Evolution-of-genetic-testing_updated-1024x721.jpg.webp 1024w, https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2022\/01\/Evolution-of-genetic-testing_updated-300x211.jpg.webp 300w, https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2022\/01\/Evolution-of-genetic-testing_updated-768x540.jpg.webp 768w, https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2022\/01\/Evolution-of-genetic-testing_updated-1536x1081.jpg.webp 1536w, https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2022\/01\/Evolution-of-genetic-testing_updated-18x12.jpg.webp 18w, https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2022\/01\/Evolution-of-genetic-testing_updated-600x422.jpg.webp 600w, https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2022\/01\/Evolution-of-genetic-testing_updated.jpg.webp 1920w\" sizes=\"(max-width: 1024px) 100vw, 1024px\" \/>\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-aa2c980 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"aa2c980\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-ed0562b\" data-id=\"ed0562b\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-5167835 elementor-widget elementor-widget-spacer\" data-id=\"5167835\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"spacer.default\">\n\t\t\t\t\t\t\t<div class=\"elementor-spacer\">\n\t\t\t<div class=\"elementor-spacer-inner\"><\/div>\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-6309ee1 elementor-widget elementor-widget-heading\" data-id=\"6309ee1\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t\t<h2 class=\"elementor-heading-title elementor-size-default\">INAKTIV FORSKNING<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-19d9dcd elementor-widget elementor-widget-text-editor\" data-id=\"19d9dcd\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t\t\t\t\t\t<p>Vi har laget en liste over INAKTIVE forskningsstudier\/prosjekter knyttet til r(20), inkludert en kort oversikt over hver studie\/prosjekt.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-2666fab elementor-widget elementor-widget-accordion\" data-id=\"2666fab\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"accordion.default\">\n\t\t\t\t\t\t\t<div class=\"elementor-accordion\">\n\t\t\t\t\t\t\t<div class=\"elementor-accordion-item\">\n\t\t\t\t\t<div id=\"elementor-tab-title-4021\" class=\"elementor-tab-title\" data-tab=\"1\" role=\"button\" aria-controls=\"elementor-tab-content-4021\" aria-expanded=\"false\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-accordion-icon elementor-accordion-icon-left\" aria-hidden=\"true\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-accordion-icon-closed\"><svg class=\"e-font-icon-svg e-fas-dna\" viewbox=\"0 0 448 512\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\"><path d=\"M.1 494.1c-1.1 9.5 6.3 17.8 15.9 17.8l32.3.1c8.1 0 14.9-5.9 16-13.9.7-4.9 1.8-11.1 3.4-18.1H380c1.6 6.9 2.9 13.2 3.5 18.1 1.1 8 7.9 14 16 13.9l32.3-.1c9.6 0 17.1-8.3 15.9-17.8-4.6-37.9-25.6-129-118.9-207.7-17.6 12.4-37.1 24.2-58.5 35.4 6.2 4.6 11.4 9.4 17 14.2H159.7c21.3-18.1 47-35.6 78.7-51.4C410.5 199.1 442.1 65.8 447.9 17.9 449 8.4 441.6.1 432 .1L399.6 0c-8.1 0-14.9 5.9-16 13.9-.7 4.9-1.8 11.1-3.4 18.1H67.8c-1.6-7-2.7-13.1-3.4-18.1-1.1-8-7.9-14-16-13.9L16.1.1C6.5.1-1 8.4.1 17.9 5.3 60.8 31.4 171.8 160 256 31.5 340.2 5.3 451.2.1 494.1zM224 219.6c-25.1-13.7-46.4-28.4-64.3-43.6h128.5c-17.8 15.2-39.1 30-64.2 43.6zM355.1 96c-5.8 10.4-12.8 21.1-21 32H114c-8.3-10.9-15.3-21.6-21-32h262.1zM92.9 416c5.8-10.4 12.8-21.1 21-32h219.4c8.3 10.9 15.4 21.6 21.2 32H92.9z\"><\/path><\/svg><\/span>\n\t\t\t\t\t\t\t\t<span class=\"elementor-accordion-icon-opened\"><svg class=\"e-font-icon-svg e-fas-minus\" viewbox=\"0 0 448 512\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\"><path d=\"M416 208H32c-17.67 0-32 14.33-32 32v32c0 17.67 14.33 32 32 32h384c17.67 0 32-14.33 32-32v-32c0-17.67-14.33-32-32-32z\"><\/path><\/svg><\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t<a class=\"elementor-accordion-title\" tabindex=\"0\">Ringe <span class='tooltipsall tooltipsincontent classtoolTips0'>Kromosomer<\/span> Biorepository - NIHR BioResource, Storbritannia<\/a>\n\t\t\t\t\t<\/div>\n\t\t\t\t\t<div id=\"elementor-tab-content-4021\" class=\"elementor-tab-content elementor-clearfix\" data-tab=\"1\" role=\"region\" aria-labelledby=\"elementor-tab-title-4021\"><p><strong>NASJONAL<\/strong> (Kun Storbritannia)<br \/><strong>P\u00e5begynt<\/strong>juni 2022<br \/><strong>N\u00c5V\u00c6RENDE STATUS<\/strong>: STOPPET<\/p><p>Rekruttering av individer til \u00e5 gi blodpr\u00f8ver og fenotype (symptominformasjon) knyttet til pasientkohorter med sjeldne sykdommer ble utf\u00f8rt. <strong>avviklet<\/strong> som en del av en finansieringsomstrukturering innenfor NIHR BioResource fra 1. oktober 2024. Frem til dette tidspunktet hadde det ikke blitt gjennomf\u00f8rt noen aktiv rekruttering av pasienter med ringkromosom.<\/p><p>Barn under 16 \u00e5r kan fortsatt rekrutteres til <a href=\"https:\/\/www.bioresource.nihr.ac.uk\/d-cyphr\/\">D-CYPHER-studien<\/a>Dette p\u00e5g\u00e5r og p\u00e5virkes ikke av BioResources fokusendringer.<\/p><\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-a915162 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"a915162\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-5b9fe68\" data-id=\"5b9fe68\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap\">\n\t\t\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<\/div>\n\t\t<script type=\"text\/javascript\"> toolTips('.classtoolTips0','Chromosomes are long string-like structures that store all of our DNA. 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