{"id":12987,"date":"2026-03-05T20:19:18","date_gmt":"2026-03-05T20:19:18","guid":{"rendered":"https:\/\/ring20researchsupport.co.uk\/?page_id=12987"},"modified":"2026-04-17T08:08:09","modified_gmt":"2026-04-17T07:08:09","slug":"sudep_survey","status":"publish","type":"page","link":"https:\/\/ring20researchsupport.co.uk\/ja\/sudep_survey\/","title":{"rendered":"SUDEP\u8abf\u67fb"},"content":{"rendered":"\t\t<div data-elementor-type=\"wp-page\" data-elementor-id=\"12987\" class=\"elementor elementor-12987\" data-elementor-post-type=\"page\">\n\t\t\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-02a187e elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"02a187e\" 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-5489400\" data-id=\"5489400\" 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<section class=\"elementor-section elementor-inner-section elementor-element elementor-element-2eec375 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"2eec375\" data-element_type=\"section\" data-e-type=\"section\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;}\">\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-inner-column elementor-element elementor-element-ec90e24\" data-id=\"ec90e24\" 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-d47f6e2 elementor-widget elementor-widget-heading\" data-id=\"d47f6e2\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t\t<p class=\"elementor-heading-title elementor-size-default\">On this page:<\/p>\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<div class=\"elementor-element elementor-element-7f8b528 elementor-widget elementor-widget-table-of-contents\" data-id=\"7f8b528\" data-element_type=\"widget\" data-e-type=\"widget\" data-settings=\"{&quot;exclude_headings_by_selector&quot;:[],&quot;no_headings_message&quot;:&quot;No headings were found on this page.&quot;,&quot;headings_by_tags&quot;:[&quot;h2&quot;,&quot;h3&quot;,&quot;h4&quot;,&quot;h5&quot;,&quot;h6&quot;],&quot;marker_view&quot;:&quot;numbers&quot;,&quot;hierarchical_view&quot;:&quot;yes&quot;,&quot;min_height&quot;:{&quot;unit&quot;:&quot;px&quot;,&quot;size&quot;:&quot;&quot;,&quot;sizes&quot;:[]},&quot;min_height_tablet&quot;:{&quot;unit&quot;:&quot;px&quot;,&quot;size&quot;:&quot;&quot;,&quot;sizes&quot;:[]},&quot;min_height_mobile&quot;:{&quot;unit&quot;:&quot;px&quot;,&quot;size&quot;:&quot;&quot;,&quot;sizes&quot;:[]}}\" data-widget_type=\"table-of-contents.default\">\n\t\t\t\t\t\t\t\t\t<div id=\"elementor-toc__7f8b528\" class=\"elementor-toc__body\">\n\t\t\t<div class=\"elementor-toc__spinner-container\">\n\t\t\t\t<svg class=\"elementor-toc__spinner eicon-animation-spin e-font-icon-svg e-eicon-loading\" aria-hidden=\"true\" viewBox=\"0 0 1000 1000\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\"><path d=\"M500 975V858C696 858 858 696 858 500S696 142 500 142 142 304 142 500H25C25 237 238 25 500 25S975 237 975 500 763 975 500 975Z\"><\/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-7c299fb elementor-widget elementor-widget-image\" data-id=\"7c299fb\" 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\" src=\"https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/elementor\/thumbs\/patient-survey-q9n3osttjahvx7psxagst0zk5ciocwazr2nhzaic2o.png\" title=\"patient survey\" alt=\"patient survey\" loading=\"lazy\" \/>\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-55f5694 elementor-widget elementor-widget-heading\" data-id=\"55f5694\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t\t<p class=\"elementor-heading-title elementor-size-default\">Link to participate below:<\/p>\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-6007bce elementor-widget elementor-widget-button\" data-id=\"6007bce\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"button.default\">\n\t\t\t\t\t\t\t\t\t\t<a class=\"elementor-button elementor-button-link elementor-size-sm\" href=\"https:\/\/app.onlinesurveys.jisc.ac.uk\/s\/newcastle\/ring20-sudep-risk-survey-last-12-months\">\n\t\t\t\t\t\t<span class=\"elementor-button-content-wrapper\">\n\t\t\t\t\t\t\t\t\t<span class=\"elementor-button-text\">Click here<\/span>\n\t\t\t\t\t<\/span>\n\t\t\t\t\t<\/a>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-323acdd elementor-widget elementor-widget-text-editor\" data-id=\"323acdd\" 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;\">The questionnaire will remain open for 4 weeks.<\/p><p style=\"text-align: center;\">By sharing your experiences, you will contribute to making change happen.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-3e17927 elementor-countdown--label-block elementor-widget elementor-widget-countdown\" data-id=\"3e17927\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"countdown.default\">\n\t\t\t\t\t\t\t<div class=\"elementor-countdown-wrapper\" data-date=\"1776343320\">\n\t\t\t<div class=\"elementor-countdown-item\"><span class=\"elementor-countdown-digits elementor-countdown-days\"><\/span> <span class=\"elementor-countdown-label\">Dager<\/span><\/div><div class=\"elementor-countdown-item\"><span class=\"elementor-countdown-digits elementor-countdown-hours\"><\/span> <span class=\"elementor-countdown-label\">Timer<\/span><\/div><div class=\"elementor-countdown-item\"><span class=\"elementor-countdown-digits elementor-countdown-minutes\"><\/span> <span class=\"elementor-countdown-label\">Minutter<\/span><\/div><div class=\"elementor-countdown-item\"><span class=\"elementor-countdown-digits elementor-countdown-seconds\"><\/span> <span class=\"elementor-countdown-label\">Sekunder<\/span><\/div>\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-253efbe elementor-widget elementor-widget-heading\" data-id=\"253efbe\" 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\">Webinar on managing SUDEP risk in r(20)<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-ca0dba0 elementor-widget elementor-widget-text-editor\" data-id=\"ca0dba0\" 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>We will be hosting a webinar for families explaining SUDEP, the risks and how to minimise them.<\/p><p>The webinar is schedule for 16th April 2026 18:30 &#8211; 19:30 UK time.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-551ed9b elementor-widget elementor-widget-text-editor\" data-id=\"551ed9b\" 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>The recording is available below.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-c517785 elementor-widget elementor-widget-video\" data-id=\"c517785\" data-element_type=\"widget\" data-e-type=\"widget\" data-settings=\"{&quot;youtube_url&quot;:&quot;https:\\\/\\\/youtu.be\\\/cu2Mr_VACnk&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-fe8a146 elementor-widget elementor-widget-heading\" data-id=\"fe8a146\" 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\">Add subtitles<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-58026b0 elementor-widget elementor-widget-text-editor\" data-id=\"58026b0\" 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><span style=\"font-size: 14px; color: var( --e-global-color-text ); font-family: var( --e-global-typography-text-font-family ), Sans-serif;\">To follow the videos with subtitles simply left-click on the Settings cog (in the bottom right-hand corner of the video) and select:<\/span><\/p><p style=\"text-align: left; padding-left: 40px;\"><strong>subtitles\/CC (1)\u00a0 \u00a0 \u00a0 \u00a0OFF &gt;<\/strong><\/p><p style=\"text-align: left;\">then select:<\/p><p style=\"text-align: left; padding-left: 40px;\"><strong>English (auto-generated)<\/strong><\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-8c03c35 elementor-widget elementor-widget-text-editor\" data-id=\"8c03c35\" 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><span style=\"font-size: 14px; color: var( --e-global-color-text ); font-family: var( --e-global-typography-text-font-family ), Sans-serif;\">For subtitles in another language simply continue by selecting:<\/span><\/p><p style=\"padding-left: 40px;\"><strong>subtitles\/CC (1)\u00a0 \u00a0 English (auto-generated) &gt;<\/strong><\/p><p>then select:<\/p><p style=\"padding-left: 40px;\"><strong>Auto-translate<\/strong><\/p><p>and select the language of your choice from the list.<\/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<div class=\"elementor-column elementor-col-50 elementor-top-column elementor-element elementor-element-5f884d4\" data-id=\"5f884d4\" 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-97c53f7 elementor-widget elementor-widget-text-editor\" data-id=\"97c53f7\" 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>NEW!! Research Study on understanding SUDEP and managing risk<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-1cb09bb elementor-widget elementor-widget-text-editor\" data-id=\"1cb09bb\" 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>Sudden Unexpected Death in EPilepsy (SUDEP) awareness and mortality risk factors among individuals with ring chromosome 20 syndrome is not a subject widely discussed by families or by their medical teams &#8211; and yet, understanding risk and how to reduce risk is extremely important.<\/p><p>This new study is kindly supported by Philippe Ryvlin, Professor of Neurology in Lausanne, Switzerland and Alex Grundmann, Academic Clinical Fellow at the Royal Victoria Infirmary, Newcastle-upon-Tyne, UK &#8211; both are experts in this field.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-d0baa27 elementor-widget elementor-widget-heading\" data-id=\"d0baa27\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t\t<h3 class=\"elementor-heading-title elementor-size-default\">Why are we doing this?\n\n<\/h3>\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-82d9658 elementor-widget elementor-widget-text-editor\" data-id=\"82d9658\" 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>We want to hear from as many families as possible to better understand SUDEP awareness and mortality risk factors among individuals with ring chromosome 20 syndrome.<\/p><p><strong>By collecting experiences directly from individuals or their parents\/caregivers we want to see if your experiences can add any new knowledge to what has been documented about understanding SUDEP and mortality risk in r(20) syndrome.<\/strong><\/p><p style=\"padding-left: 280px;\"><strong style=\"color: #61d6ff; font-size: 16px;\">Making connections, supporting families<\/strong><\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-a6a4ce5 elementor-widget elementor-widget-heading\" data-id=\"a6a4ce5\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t\t<h3 class=\"elementor-heading-title elementor-size-default\">Will this benefit me\/my child?\n\n<\/h3>\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-d8ee5bd elementor-widget elementor-widget-text-editor\" data-id=\"d8ee5bd\" 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>By sharing your insights, you will contribute to improving how and when SUDEP risk is discussed with families with a Ring Chromosome 20 diagnosis &#8211; and what can be done to minimise risk.<\/p><p>The knowledge gained from this study will serve to raise awareness among the wider population and potentially improve support and care for individuals affected by r(20) syndrome.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-2a63b20 elementor-widget elementor-widget-heading\" data-id=\"2a63b20\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t\t<h3 class=\"elementor-heading-title elementor-size-default\">Who is eligible?\n\n<\/h3>\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-cbd0159 elementor-widget elementor-widget-text-editor\" data-id=\"cbd0159\" 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>The study is open to all individuals and their families who are living with a ring chromosome 20 syndrome worldwide.<\/p><p>Our Ring20 Champions can help translate the questions and your answers in other languages including: French, Dutch, Italian, Portuguese, Japanese, Spanish, German<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-b8a430c elementor-widget elementor-widget-heading\" data-id=\"b8a430c\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t\t<h3 class=\"elementor-heading-title elementor-size-default\">What will I have to do?\n\n<\/h3>\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-ef5baa9 elementor-widget elementor-widget-text-editor\" data-id=\"ef5baa9\" 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>You can participate by completing our online questionnaire <a href=\"https:\/\/app.onlinesurveys.jisc.ac.uk\/s\/newcastle\/ring20-sudep-risk-survey-last-12-months\">here<\/a>.<\/p><p>You can choose to participate as:<\/p><ul><li>an adult aged 18 or over living with r(20) &#8211; with or without your parent(s) support<\/li><li>a parent(s)\/carer(s) of someone living with r(20)<\/li><li>a sibling(s) of someone living with r(20) &#8211; parental support required for &lt;18 years of age<\/li><li>a close family member involved in caring for someone living with r(20)<\/li><\/ul>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-26d8536 elementor-widget elementor-widget-heading\" data-id=\"26d8536\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t\t<h3 class=\"elementor-heading-title elementor-size-default\">What information will I be asked to provide?\n\n<\/h3>\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-b2e741d elementor-widget elementor-widget-text-editor\" data-id=\"b2e741d\" 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>Prepare by thinking about your support needs:<\/p><ol><li><strong>Recent seizure History<\/strong>: How many tonic clonic seizures have you experienced in the last 12 months? What other seizure types have you experienced in that period?<\/li><li><strong>Living Situation and Night-time Supervision<\/strong>: Do you sleep alone in the house, in your own room with other family members or does your parent\/caregiver sleep in the same room as you?<\/li><li><strong>Treatment &amp; Adherence<\/strong>: What treatments are you currently taking to control your seizures and do you take them regularly?<\/li><li><strong>Medical Risk &amp; Health Factors<\/strong>: Do you use rescue medication and how often have you had to use this in the last 12 months?<\/li><li><b>SUDEP Awareness &amp; Impact: <\/b>Has SUDEP been discussed with you and if so, how clear was the infromation?<\/li><li><b>Safety Measures at Home: <\/b>Which safety measures are available at home?<\/li><li><b>Community Priorities:<\/b> What\u00a0 would help you most to understand or better manage SUDEP?<\/li><\/ol>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-a5210bb elementor-widget elementor-widget-heading\" data-id=\"a5210bb\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t\t<h3 class=\"elementor-heading-title elementor-size-default\">What will happen to the information collected?<\/h3>\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-749b762 elementor-widget elementor-widget-text-editor\" data-id=\"749b762\" 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>This new study is kindly supported by Philippe Ryvlin, Professor of neurology in Lausanne, Switzerland and Alex Grundmann, Academic Clinical Fellow at the Royal Victoria Infirmary, Newcastle-upon-Tyne, UK &#8211; both are experts in this field.<\/p><p>We aim to publish a new research paper on the risk factors affecting mortality including the risk of SUDEP in r(20) syndrome based on the findings of this study.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-5293a47 elementor-widget elementor-widget-heading\" data-id=\"5293a47\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t\t<h3 class=\"elementor-heading-title elementor-size-default\">Consent and Data Privacy<\/h3>\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-d2f76ca elementor-widget elementor-widget-text-editor\" data-id=\"d2f76ca\" 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>The information you provide will be treated with the utmost confidentiality. It will be used to help us update our support services and to help us fundraise, with anonymity protected. Your privacy will be protected, and no names will be used to ensure confidentiality and to comply with ethical guidelines. Please note that participation in this study is completely voluntary, and you have the right to withdraw at any time without providing a reason.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-60659bf elementor-widget elementor-widget-heading\" data-id=\"60659bf\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t\t<h3 class=\"elementor-heading-title elementor-size-default\">Want more information before you decide?<\/h3>\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-3be7f1c elementor-widget elementor-widget-text-editor\" data-id=\"3be7f1c\" 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>Contact your Ring20 Champion to ask any questions you may have.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-f3c39f7 elementor-widget elementor-widget-button\" data-id=\"f3c39f7\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"button.default\">\n\t\t\t\t\t\t\t\t\t\t<a class=\"elementor-button elementor-button-link elementor-size-sm\" href=\"https:\/\/ring20researchsupport.co.uk\/unravel\/#Champions\" target=\"_blank\">\n\t\t\t\t\t\t<span class=\"elementor-button-content-wrapper\">\n\t\t\t\t\t\t<span class=\"elementor-button-icon\">\n\t\t\t\t<svg aria-hidden=\"true\" class=\"e-font-icon-svg e-fas-external-link-alt\" viewBox=\"0 0 512 512\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\"><path d=\"M432,320H400a16,16,0,0,0-16,16V448H64V128H208a16,16,0,0,0,16-16V80a16,16,0,0,0-16-16H48A48,48,0,0,0,0,112V464a48,48,0,0,0,48,48H400a48,48,0,0,0,48-48V336A16,16,0,0,0,432,320ZM488,0h-128c-21.37,0-32.05,25.91-17,41l35.73,35.73L135,320.37a24,24,0,0,0,0,34L157.67,377a24,24,0,0,0,34,0L435.28,133.32,471,169c15,15,41,4.5,41-17V24A24,24,0,0,0,488,0Z\"><\/path><\/svg>\t\t\t<\/span>\n\t\t\t\t\t\t\t\t\t<span class=\"elementor-button-text\">Find your Ring20 Champion<\/span>\n\t\t\t\t\t<\/span>\n\t\t\t\t\t<\/a>\n\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<\/div>\n\t\t","protected":false},"excerpt":{"rendered":"<p>On this page: Link to participate below: Click here The questionnaire will remain open for 4 weeks. By sharing your experiences, you will contribute to making change happen. Days Hours Minutes Seconds Webinar on managing SUDEP risk in r(20) We will be hosting a webinar for families explaining SUDEP, the risks and how to minimise them. The webinar is schedule for 16th April 2026 18:30 &#8211; 19:30 UK time. The recording is available below. https:\/\/youtu.be\/cu2Mr_VACnk Add subtitles To follow the videos with subtitles simply left-click on the Settings cog (in the bottom right-hand corner of the video) and select: subtitles\/CC (1)\u00a0 \u00a0 \u00a0 \u00a0OFF &gt; then select: English (auto-generated) For [&hellip;]<\/p>\n","protected":false},"author":3,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","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":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"tablet":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"mobile":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""}},"ast-content-background-meta":{"desktop":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"tablet":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"mobile":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""}},"footnotes":""},"class_list":["post-12987","page","type-page","status-publish","hentry"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.1 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>SUDEP survey - Ring20 Research and Support UK CIO<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/ring20researchsupport.co.uk\/ja\/sudep_survey\/\" \/>\n<meta property=\"og:locale\" content=\"ja_JP\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"SUDEP survey - Ring20 Research and Support UK CIO\" \/>\n<meta property=\"og:description\" content=\"On this page: Link to participate below: Click here The questionnaire will remain open for 4 weeks. 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