{"id":5317,"date":"2021-04-30T15:02:01","date_gmt":"2021-04-30T14:02:01","guid":{"rendered":"https:\/\/ring20researchsupport.co.uk\/?page_id=5317"},"modified":"2021-05-05T16:22:27","modified_gmt":"2021-05-05T15:22:27","slug":"ncardrs-self-registration-pilot","status":"publish","type":"page","link":"https:\/\/ring20researchsupport.co.uk\/zh\/ncardrs-self-registration-pilot\/","title":{"rendered":"NCARDRS \u81ea\u52a9\u6ce8\u518c\u8bd5\u70b9\u9879\u76ee"},"content":{"rendered":"\t\t<div data-elementor-type=\"wp-page\" data-elementor-id=\"5317\" class=\"elementor elementor-5317\" 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<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;No se ha encontrado ning\\u00fan encabezado en esta p\\u00e1gina.&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\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-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\/brain-2062057_1920-q9nchr0o16dkrpbv5sl12jnz5obaupknntuml6kbz4.jpg\" title=\"Power of the Brain\" alt=\"Power of the Brain\" loading=\"lazy\" \/>\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-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>We\u2019ve been talking to the National Congenital Anomaly and Rare Disease Registration Service (NCARDRS) about piloting a new self-registration service with them for r(20) patients\/patient families. We do hope that many of you will participate to help inform with a view to ultimately improving health services for those living with r(20) in England. If this is successful, then we may reach out to the public health services running similar programs in the devolved nations and perhaps into Europe and beyond?<\/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 found out that our national rare disease registration service holds no record of anyone with r(20) syndrome and we were shocked, but not surprised. A relatively new service in England (and similar services operate in Scotland, Wales and Northern Ireland) GPs and doctors are asked to report patients diagnosed with a rare disease before the age of 5. Herein lies the problem, many r(20) patients aren\u2019t diagnosed until after their 5th birthday. We want to get r(20) patients on the map, so that our national health service recognises that they exist and need care.<\/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\">What\u2019s in it for you?\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>Collecting information helps NCARDRS\/Public Health England better understand rare diseases like ours to help make sure that people living with these conditions receive the best possible individual care. The national register is also used for research and planning.<\/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 service is available to all our families who are registered and\/or treated in England \u2013 as they are part of Public Health England.<\/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\">How will I contact NCARDRS?\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>To start the process you will need to send an initial e-mail to the NCARDRS team e-mail address (phe.ncardrsrd@nhs.net) requesting to register in relation to this pilot. You will receive a reply with instructions on what to do next.<\/p><p>Safe transfer of information is extremely important to the NCARDRS team. General e-mail is not a secure method of data transfer \u2013 messages sent in this way will not be encrypted and may be at risk of interception. Because you will be sending your personal information to NCARDRS they want to give you an option to transfer your information securely, and to do this they use an encrypted e-mail system called Egress switch.<\/p><p>In future NCARDRS are hoping to be able to offer an online registration system for patients to register with them. The development of this is in discussion and so as an interim solution they have agreement that they can collect patient information for registration via e-mail.<\/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 you 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><span style=\"font-size: 14px; color: var( --e-global-color-text ); font-family: var( --e-global-typography-text-font-family ), Sans-serif;\">If the patient is reporting themselves NCARDRS will ask for the following information:<\/span><\/p><ul><li>Name<\/li><li>Date of birth<\/li><li>Sex<\/li><li>Address<\/li><li>Rare disease<\/li><li>Treating Clinician<\/li><li>Specialist centre \/ hospital<\/li><li>Confirmation that they agree to NCARDRS holding their data<\/li><li>Confirmation that they are the patient<\/li><li>Confirmation that they understand NCARDRS will contact their clinician for further information.<\/li><\/ul><p>If the patient is the person\u2019s child, NCARDRS will ask for the following information.<\/p><ul><li>Patient\u2019s name<\/li><li>Patient\u2019s date of birth<\/li><li>Patient\u2019s sex<\/li><li>Patient\u2019s address<\/li><li>Rare disease<\/li><li>Patient\u2019s treating Clinician<\/li><li>Specialist centre \/ hospital<\/li><li>The name of the person who is registering the child.<\/li><li>Confirmation that they are the patient\u2019s parent<\/li><li>Confirmation that they agree to NCARDRS holding their child\u2019s data<\/li><li>Confirmation that they understand NCARDRS will contact their child\u2019s clinician for further information.<\/li><\/ul>\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\tThe NCARDRS patient leaflet is available at the following\u00a0<a href=\"https:\/\/www.gov.uk\/government\/publications\/national-congenital-anomaly-and-rare-disease-registration-service-introductory-leaflet\">website link<\/a>:\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:\/\/www.gov.uk\/government\/publications\/national-congenital-anomaly-and-rare-disease-registration-service-introductory-leaflet\" 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\">The NCARDRS patient leaflet is available 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\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: We\u2019ve been talking to the National Congenital Anomaly and Rare Disease Registration Service (NCARDRS) about piloting a new self-registration service with them for r(20) patients\/patient families. We do hope that many of you will participate to help inform with a view to ultimately improving health services for those living with r(20) in [&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":"no-sidebar","site-content-layout":"page-builder","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":"disabled","ast-breadcrumbs-content":"","ast-featured-img":"disabled","footer-sml-layout":"","ast-disable-related-posts":"","theme-transparent-header-meta":"default","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-5317","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>NCARDRS Self-Registration Pilot - 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\/zh\/ncardrs-self-registration-pilot\/\" \/>\n<meta property=\"og:locale\" content=\"zh_CN\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"NCARDRS Self-Registration Pilot - Ring20 Research and Support UK CIO\" \/>\n<meta property=\"og:description\" content=\"On this page: We\u2019ve been talking to the National Congenital Anomaly and Rare Disease Registration Service (NCARDRS) about piloting a new self-registration service with them for r(20) patients\/patient families. 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