{"id":10966,"date":"2023-07-19T12:21:20","date_gmt":"2023-07-19T11:21:20","guid":{"rendered":"https:\/\/ring20researchsupport.co.uk\/?page_id=10966"},"modified":"2023-07-24T16:54:33","modified_gmt":"2023-07-24T15:54:33","slug":"patient_survey","status":"publish","type":"page","link":"https:\/\/ring20researchsupport.co.uk\/it\/patient_survey\/","title":{"rendered":"Indagine sui pazienti Ring20"},"content":{"rendered":"\t\t<div data-elementor-type=\"wp-page\" data-elementor-id=\"10966\" class=\"elementor elementor-10966\" 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;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;no_headings_message&quot;:&quot;Es wurden keine \\u00dcberschriften auf dieser Seite gefunden.&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\">Sign up to participate:<\/p>\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-67fcf47 elementor-button-align-stretch elementor-widget elementor-widget-form\" data-id=\"67fcf47\" data-element_type=\"widget\" data-e-type=\"widget\" data-settings=\"{&quot;step_next_label&quot;:&quot;Next&quot;,&quot;step_previous_label&quot;:&quot;Previous&quot;,&quot;button_width&quot;:&quot;100&quot;,&quot;step_type&quot;:&quot;number_text&quot;,&quot;step_icon_shape&quot;:&quot;circle&quot;}\" data-widget_type=\"form.default\">\n\t\t\t\t\t\t\t<form class=\"elementor-form\" method=\"post\" name=\"New Form\" aria-label=\"New Form\">\n\t\t\t<input type=\"hidden\" name=\"post_id\" value=\"10966\"\/>\n\t\t\t<input type=\"hidden\" name=\"form_id\" value=\"67fcf47\"\/>\n\t\t\t<input type=\"hidden\" name=\"referer_title\" value=\"Ring20 Patient Survey - Ring20 Research and Support UK CIO\" \/>\n\n\t\t\t\t\t\t\t<input type=\"hidden\" name=\"queried_id\" value=\"10966\"\/>\n\t\t\t\n\t\t\t<div class=\"elementor-form-fields-wrapper elementor-labels-above\">\n\t\t\t\t\t\t\t\t<div class=\"elementor-field-type-text elementor-field-group elementor-column elementor-field-group-name elementor-col-100\">\n\t\t\t\t\t\t\t\t\t\t\t\t<label for=\"form-field-name\" class=\"elementor-field-label\">\n\t\t\t\t\t\t\t\tFull Name\t\t\t\t\t\t\t<\/label>\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t<input size=\"1\" type=\"text\" name=\"form_fields[name]\" id=\"form-field-name\" class=\"elementor-field elementor-size-sm  elementor-field-textual\" placeholder=\"Name\">\n\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t\t\t\t<div class=\"elementor-field-type-email elementor-field-group elementor-column elementor-field-group-email elementor-col-100 elementor-field-required\">\n\t\t\t\t\t\t\t\t\t\t\t\t<label for=\"form-field-email\" class=\"elementor-field-label\">\n\t\t\t\t\t\t\t\tEmail\t\t\t\t\t\t\t<\/label>\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t<input size=\"1\" type=\"email\" name=\"form_fields[email]\" id=\"form-field-email\" class=\"elementor-field elementor-size-sm  elementor-field-textual\" placeholder=\"Email\" required=\"required\">\n\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t\t\t\t<div class=\"elementor-field-type-textarea elementor-field-group elementor-column elementor-field-group-message elementor-col-100\">\n\t\t\t\t\t\t\t\t\t\t\t\t<label for=\"form-field-message\" class=\"elementor-field-label\">\n\t\t\t\t\t\t\t\tCountry of residence\t\t\t\t\t\t\t<\/label>\n\t\t\t\t\t\t<textarea class=\"elementor-field-textual elementor-field  elementor-size-sm\" name=\"form_fields[message]\" id=\"form-field-message\" rows=\"1\" placeholder=\"Country of residence\"><\/textarea>\t\t\t\t<\/div>\n\t\t\t\t\t\t\t\t<div class=\"elementor-field-group elementor-column elementor-field-type-submit elementor-col-100 e-form__buttons\">\n\t\t\t\t\t<button class=\"elementor-button elementor-size-sm\" type=\"submit\">\n\t\t\t\t\t\t<span class=\"elementor-button-content-wrapper\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-button-text\">Send<\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t\t<\/span>\n\t\t\t\t\t<\/button>\n\t\t\t\t<\/div>\n\t\t\t<\/div>\n\t\t<\/form>\n\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;\">Your contribution to this study will be instrumental in advancing our understanding of Ring Chromosome 20 and improving support for individuals and families affected by this condition. Ring20 sincerely appreciate your time, willingness, and commitment to this important endeavour.<\/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!! International Research Study on Living with Ring Chromosome 20<\/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>We want to hear from as many families as possible, what living with r(20) is really like, in your experience. <br \/>This is a different study from our planned Natural History Study with Glasgow Children&#8217;s Hospital (which is not yet ready to proceed) because:<\/p><ol><li>We are solely focusing on the patient family perspective (not medical records)<\/li><li>We want to know what impact an r(20) diagnosis has on individuals and families<\/li><\/ol><p>The information that you provide will help to inform\u00a0 future resarch studies in r(20).<\/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>Research published on Ring Chromosome 20 has historically centred on information gathered by doctors from medical records or reports, and studies have typically been limited to small numbers of patients at a specific point in each patient\u2019s lifetime. <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 living with r(20).<\/strong><br \/>Your unique perspective and experiences are invaluable to us, and we would be honoured if you would consider participating in our research study.<\/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>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 this rare condition.<\/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 available to all\u00a0 individuals and their families who are living with a ring chromosome 20 worldwide. <br \/>Some of our Ring20 Champions (who speak a native language other than English) will be able to conduct interviews in a few other languages where appropriate including: French, Dutch, Italian, Portuguese, Japanese.<\/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 will be invited for a video interview conducted by members of our research team or your Ring20 Champion, who specialise in Ring Chromosome 20 and are passionate about making a difference.<br \/>The interview is expected to last approximately 45 minutes to an hour, allowing ample time to discuss each topic in detail. We will utilise a set of survey questions as a framework to ensure comprehensive coverage of the relevant aspects, while also providing flexibility to address any additional points you may wish to share.<\/p><p>You can choose to answer the interview as either:<\/p><ul><li>an adult aged 18 or over living with r(20) &#8211; with or without your parent(s) support<\/li><li>parent(s)\/carer(s) of someone living with r(20)<\/li><\/ul><p>You only need to request one interview session per family for a person living with r(20).<\/p>\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>During the interview, we will discuss various topics related to living with a Ring Chromosome 20 diagnosis. These topics will include, but are not limited to:<\/p><ol><li><strong>Challenges of Diagnosis:<\/strong> We would like to understand the difficulties and emotions that arose during the diagnostic process and how they impacted you or your child.<\/li><li><strong>Pattern of Inheritance:<\/strong> We will explore the inheritance pattern and gather information to contribute to our understanding of the genetic aspects of Ring Chromosome 20.<\/li><li><strong>Types of Seizures Experienced:<\/strong> We will delve into the specific types of seizures encountered, their frequency, and the impact they have on daily life.<\/li><li><strong>Trial of Medications:<\/strong> We are interested in learning about the various medications you or your child have tried, their effectiveness, and any side effects experienced.<\/li><li><strong>Education and Lifestyle:<\/strong> We will explore the educational challenges faced by individuals with Ring Chromosome 20 and discuss lifestyle adjustments that may have been necessary.<\/li><li><strong>Personal Impact:<\/strong> We would like to understand the wider impact of living with Ring Chromosome 20. beyond seizures on your personal identity and overall well-being.<\/li><\/ol><p>In preparation for the interview you might want to refresh yourself on the following information (if you have received this from your medical team\/letters and are willing to share), Don&#8217;t worry if you don&#8217;t have some or all of this information:<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-97bb53d elementor-icon-list--layout-traditional elementor-list-item-link-full_width elementor-widget elementor-widget-icon-list\" data-id=\"97bb53d\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"icon-list.default\">\n\t\t\t\t\t\t\t<ul class=\"elementor-icon-list-items\">\n\t\t\t\t\t\t\t<li class=\"elementor-icon-list-item\">\n\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-icon-list-icon\">\n\t\t\t\t\t\t\t<svg aria-hidden=\"true\" class=\"e-font-icon-svg e-fas-diagnoses\" viewBox=\"0 0 640 512\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\"><path d=\"M496 256c8.8 0 16-7.2 16-16s-7.2-16-16-16-16 7.2-16 16 7.2 16 16 16zm-176-80c48.5 0 88-39.5 88-88S368.5 0 320 0s-88 39.5-88 88 39.5 88 88 88zM59.8 364c10.2 15.3 29.3 17.8 42.9 9.8 16.2-9.6 56.2-31.7 105.3-48.6V416h224v-90.7c49.1 16.8 89.1 39 105.3 48.6 13.6 8 32.7 5.3 42.9-9.8l17.8-26.7c8.8-13.2 7.6-34.6-10-45.1-11.9-7.1-29.7-17-51.1-27.4-28.1 46.1-99.4 17.8-87.7-35.1C409.3 217.2 365.1 208 320 208c-57 0-112.9 14.5-160 32.2-.2 40.2-47.6 63.3-79.2 36-11.2 6-21.3 11.6-28.7 16-17.6 10.5-18.8 31.8-10 45.1L59.8 364zM368 344c13.3 0 24 10.7 24 24s-10.7 24-24 24-24-10.7-24-24 10.7-24 24-24zm-96-96c13.3 0 24 10.7 24 24s-10.7 24-24 24-24-10.7-24-24 10.7-24 24-24zm-160 8c8.8 0 16-7.2 16-16s-7.2-16-16-16-16 7.2-16 16 7.2 16 16 16zm512 192H16c-8.8 0-16 7.2-16 16v32c0 8.8 7.2 16 16 16h608c8.8 0 16-7.2 16-16v-32c0-8.8-7.2-16-16-16z\"><\/path><\/svg>\t\t\t\t\t\t<\/span>\n\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-icon-list-text\">Genetic tests taken to find your r(20) diagnosis<\/span>\n\t\t\t\t\t\t\t\t\t<\/li>\n\t\t\t\t\t\t\t\t<li class=\"elementor-icon-list-item\">\n\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-icon-list-icon\">\n\t\t\t\t\t\t\t<svg aria-hidden=\"true\" class=\"e-font-icon-svg e-fas-notes-medical\" 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 48-48V112c0-26.5-21.5-48-48-48zM192 40c13.3 0 24 10.7 24 24s-10.7 24-24 24-24-10.7-24-24 10.7-24 24-24zm96 304c0 4.4-3.6 8-8 8h-56v56c0 4.4-3.6 8-8 8h-48c-4.4 0-8-3.6-8-8v-56h-56c-4.4 0-8-3.6-8-8v-48c0-4.4 3.6-8 8-8h56v-56c0-4.4 3.6-8 8-8h48c4.4 0 8 3.6 8 8v56h56c4.4 0 8 3.6 8 8v48zm0-192c0 4.4-3.6 8-8 8H104c-4.4 0-8-3.6-8-8v-16c0-4.4 3.6-8 8-8h176c4.4 0 8 3.6 8 8v16z\"><\/path><\/svg>\t\t\t\t\t\t<\/span>\n\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-icon-list-text\">Your karyotype result<\/span>\n\t\t\t\t\t\t\t\t\t<\/li>\n\t\t\t\t\t\t\t\t<li class=\"elementor-icon-list-item\">\n\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-icon-list-icon\">\n\t\t\t\t\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\t\t\t<\/span>\n\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-icon-list-text\">Names of current medications (and list of previous medications tried)<\/span>\n\t\t\t\t\t\t\t\t\t<\/li>\n\t\t\t\t\t\t\t\t<li class=\"elementor-icon-list-item\">\n\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-icon-list-icon\">\n\t\t\t\t\t\t\t<svg aria-hidden=\"true\" class=\"e-font-icon-svg e-fas-list\" viewBox=\"0 0 512 512\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\"><path d=\"M80 368H16a16 16 0 0 0-16 16v64a16 16 0 0 0 16 16h64a16 16 0 0 0 16-16v-64a16 16 0 0 0-16-16zm0-320H16A16 16 0 0 0 0 64v64a16 16 0 0 0 16 16h64a16 16 0 0 0 16-16V64a16 16 0 0 0-16-16zm0 160H16a16 16 0 0 0-16 16v64a16 16 0 0 0 16 16h64a16 16 0 0 0 16-16v-64a16 16 0 0 0-16-16zm416 176H176a16 16 0 0 0-16 16v32a16 16 0 0 0 16 16h320a16 16 0 0 0 16-16v-32a16 16 0 0 0-16-16zm0-320H176a16 16 0 0 0-16 16v32a16 16 0 0 0 16 16h320a16 16 0 0 0 16-16V80a16 16 0 0 0-16-16zm0 160H176a16 16 0 0 0-16 16v32a16 16 0 0 0 16 16h320a16 16 0 0 0 16-16v-32a16 16 0 0 0-16-16z\"><\/path><\/svg>\t\t\t\t\t\t<\/span>\n\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-icon-list-text\">List of types of seizures - be able to describe them, how often they occur, how long they last...<\/span>\n\t\t\t\t\t\t\t\t\t<\/li>\n\t\t\t\t\t\t<\/ul>\n\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>We aim to publish a new research paper on living with r(20) based on the findings of this study. Ring20 will be ably supported in the data collection and analysis by colleagues at Newcastle University, UK. By sharing your insights, you will contribute to the comprehensive understanding of the challenges, impacts, and other aspects associated with a Ring Chromosome 20 diagnosis.<\/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>To ensure accuracy and respect for your words, with your explicit consent, we will record the interview session and transcribe it verbatim. This process will help us ensure that no valuable information is overlooked and that responses are accurately captured.<\/p><p>Please note that participation in this study is completely voluntary, and you have the right to withdraw at any time without providing a reason. The information you provide will be treated with the utmost confidentiality and used exclusively for research purposes. Your privacy will be protected, and all data will be anonymized to ensure confidentiality and comply with ethical guidelines.<\/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<section class=\"elementor-section elementor-top-section elementor-element elementor-element-173715e elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"173715e\" 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-edef15d\" data-id=\"edef15d\" 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","protected":false},"excerpt":{"rendered":"<p>On this page: Sign up to participate: Your contribution to this study will be instrumental in advancing our understanding of Ring Chromosome 20 and improving support for individuals and families affected by this condition. Ring20 sincerely appreciate your time, willingness, and commitment to this important endeavour. NEW!! International Research Study on Living with Ring Chromosome [&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-10966","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>Ring20 Patient 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\/it\/patient_survey\/\" \/>\n<meta property=\"og:locale\" content=\"it_IT\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Ring20 Patient Survey - Ring20 Research and Support UK CIO\" \/>\n<meta property=\"og:description\" content=\"On this page: Sign up to participate: Your contribution to this study will be instrumental in advancing our understanding of Ring Chromosome 20 and improving support for individuals and families affected by this condition. 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