{"id":683,"date":"2023-05-17T10:21:20","date_gmt":"2023-05-17T08:21:20","guid":{"rendered":"https:\/\/www.chu-tours.fr\/pemr-cvl\/?page_id=683"},"modified":"2023-07-11T16:10:36","modified_gmt":"2023-07-11T14:10:36","slug":"bndmr-en-quoi-suis-je-concerne","status":"publish","type":"page","link":"https:\/\/www.chu-tours.fr\/pemr-cvl\/bndmr-en-quoi-suis-je-concerne\/","title":{"rendered":"BNDMR : en quoi suis-je concern\u00e9(e) ?"},"content":{"rendered":"\t\t<div data-elementor-type=\"wp-page\" data-elementor-id=\"683\" class=\"elementor elementor-683\" data-elementor-post-type=\"page\">\n\t\t\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-6bfa0b8c elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"6bfa0b8c\" data-element_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-3c213175\" data-id=\"3c213175\" data-element_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-2708ec89 elementor-widget elementor-widget-text-editor\" data-id=\"2708ec89\" data-element_type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t<style>\/*! elementor - v3.23.0 - 15-07-2024 *\/\n.elementor-widget-text-editor.elementor-drop-cap-view-stacked .elementor-drop-cap{background-color:#69727d;color:#fff}.elementor-widget-text-editor.elementor-drop-cap-view-framed .elementor-drop-cap{color:#69727d;border:3px solid;background-color:transparent}.elementor-widget-text-editor:not(.elementor-drop-cap-view-default) .elementor-drop-cap{margin-top:8px}.elementor-widget-text-editor:not(.elementor-drop-cap-view-default) .elementor-drop-cap-letter{width:1em;height:1em}.elementor-widget-text-editor .elementor-drop-cap{float:left;text-align:center;line-height:1;font-size:50px}.elementor-widget-text-editor .elementor-drop-cap-letter{display:inline-block}<\/style>\t\t\t\t<blockquote><p>La Banque Nationale de Donn\u00e9es Maladies Rares (<strong>BNDMR<\/strong>) est une base de donn\u00e9es nationale, s\u00e9curis\u00e9e, mise en place par le minist\u00e8re de la sant\u00e9 dans le cadre du Plan National Maladies Rares 2. \u00a0Cette base vise \u00e0 \u00e9tablir une collection de donn\u00e9es homog\u00e8nes pour l&#8217;ensemble des maladies rares afin d\u2019am\u00e9liorer les connaissances \u00e9pid\u00e9miologiques par un meilleur recensement et alimenter des travaux de recherche clinique.<\/p><\/blockquote>\t\t\t\t\t\t<\/div>\n\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-d623842 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"d623842\" data-element_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-c486066\" data-id=\"c486066\" data-element_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-8420804 elementor-widget elementor-widget-text-editor\" data-id=\"8420804\" data-element_type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<h2>Les objectifs de la BNDMR sont les suivants :<\/h2><ul><li>Mieux documenter le malade et sa maladie ;<\/li><li>Mieux organiser le r\u00e9seau de soins ;<\/li><li>Rendre visible l\u2019activit\u00e9 maladies rares et aider au rapport d\u2019activit\u00e9 r\u00e9glementaire des centres Maladies Rares ;<\/li><li>Faciliter la recherche dans le domaine ;<\/li><li>Mieux exploiter le potentiel des grandes bases de donn\u00e9es nationales.<\/li><\/ul><h2>Quelles sont les donn\u00e9es collect\u00e9es ?<\/h2><p>Un set de donn\u00e9es minimum (SDM) est collect\u00e9 pour chaque patient\u00b7e.<\/p><p>Celui-ci documente la prise en charge et l\u2019\u00e9tat de sant\u00e9 des patient(e)s qui sont suivi(e)s dans les Centres de R\u00e9f\u00e9rences et les Centres de Comp\u00e9tences.<\/p><p><strong><span style=\"color: #ed1164;\">&gt;<\/span> Pour plus d\u2019informations sur SDM<\/strong>\u00a0: <a href=\"https:\/\/www.bndmr.fr\/publications\/le-set-de-donnees-minimal\/\" target=\"_blank\" rel=\"noopener\">https:\/\/www.bndmr.fr\/publications\/le-set-de-donnees-minimal\/<\/a><\/p><p>C&#8217;est par le biais de l&#8217;application BaMaRa que les donn\u00e9es sont collect\u00e9es \u00e0 partir de chaque centre, pseudonymis\u00e9es (c\u2019est-\u00e0-dire que les noms et pr\u00e9noms des patients n\u2019y figurent pas) avant d&#8217;\u00eatre transf\u00e9r\u00e9es vers la BNDMR qui est h\u00e9berg\u00e9e \u00e0 l&#8217;APHP.<\/p><p>Chaque patient en est inform\u00e9 par un affichage dans les locaux des centres hospitaliers et la remise d\u2019une notice explicative lui expliquant ses droits.<\/p><p><strong><span style=\"color: #ed1164;\">&gt;<\/span> Pour plus d\u2019informations :<\/strong><\/p><ul><li><a href=\"https:\/\/www.bndmr.fr\/\" target=\"_blank\" rel=\"noopener\">https:\/\/www.bndmr.fr\/<\/a><\/li><li><a href=\"https:\/\/www.bndmr.fr\/participer\/guides-et-bonnes-pratiques\/information-patient-bamara\/\" target=\"_blank\" rel=\"noopener\">https:\/\/www.bndmr.fr\/participer\/guides-et-bonnes-pratiques\/information-patient-bamara\/<\/a><\/li><\/ul>\t\t\t\t\t\t<\/div>\n\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-d347bff elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"d347bff\" data-element_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-e6d988a\" data-id=\"e6d988a\" data-element_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-1f08c06 elementor-widget elementor-widget-global elementor-global-1287 elementor-widget-html\" data-id=\"1f08c06\" data-element_type=\"widget\" data-widget_type=\"html.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t<!--fermeture accord\u00e9on -->\r\n<script> \r\n\tjQuery(document).ready(function($) { \r\n\tvar delay = 100; setTimeout(function() { \r\n\t$('.elementor-tab-title').removeClass('elementor-active');\r\n\t$('.elementor-tab-content').css('display', 'none'); }, delay); \r\n\t}); \r\n<\/script>\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-60e68ef elementor-widget elementor-widget-accordion\" data-id=\"60e68ef\" data-element_type=\"widget\" data-widget_type=\"accordion.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t<style>\/*! elementor - v3.23.0 - 15-07-2024 *\/\n.elementor-accordion{text-align:start}.elementor-accordion .elementor-accordion-item{border:1px solid #d5d8dc}.elementor-accordion .elementor-accordion-item+.elementor-accordion-item{border-top:none}.elementor-accordion .elementor-tab-title{margin:0;padding:15px 20px;font-weight:700;line-height:1;cursor:pointer;outline:none}.elementor-accordion .elementor-tab-title .elementor-accordion-icon{display:inline-block;width:1.5em}.elementor-accordion .elementor-tab-title .elementor-accordion-icon svg{width:1em;height:1em}.elementor-accordion .elementor-tab-title .elementor-accordion-icon.elementor-accordion-icon-right{float:right;text-align:right}.elementor-accordion .elementor-tab-title .elementor-accordion-icon.elementor-accordion-icon-left{float:left;text-align:left}.elementor-accordion .elementor-tab-title .elementor-accordion-icon .elementor-accordion-icon-closed{display:block}.elementor-accordion .elementor-tab-title .elementor-accordion-icon .elementor-accordion-icon-opened,.elementor-accordion .elementor-tab-title.elementor-active .elementor-accordion-icon-closed{display:none}.elementor-accordion .elementor-tab-title.elementor-active .elementor-accordion-icon-opened{display:block}.elementor-accordion .elementor-tab-content{display:none;padding:15px 20px;border-top:1px solid #d5d8dc}@media (max-width:767px){.elementor-accordion .elementor-tab-title{padding:12px 15px}.elementor-accordion .elementor-tab-title .elementor-accordion-icon{width:1.2em}.elementor-accordion .elementor-tab-content{padding:7px 15px}}.e-con-inner>.elementor-widget-accordion,.e-con>.elementor-widget-accordion{width:var(--container-widget-width);--flex-grow:var(--container-widget-flex-grow)}<\/style>\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-1011\" class=\"elementor-tab-title\" data-tab=\"1\" role=\"button\" aria-controls=\"elementor-tab-content-1011\" 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\"><i class=\"fas fa-plus\"><\/i><\/span>\n\t\t\t\t\t\t\t\t<span class=\"elementor-accordion-icon-opened\"><i class=\"fas fa-minus\"><\/i><\/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\">Information BNDMR\/BaMaRa<\/a>\n\t\t\t\t\t<\/div>\n\t\t\t\t\t<div id=\"elementor-tab-content-1011\" class=\"elementor-tab-content elementor-clearfix\" data-tab=\"1\" role=\"region\" aria-labelledby=\"elementor-tab-title-1011\"><ul><li><a href=\"https:\/\/www.bndmr.fr\/\" target=\"_blank\" rel=\"noopener\"><strong>BNDMR<\/strong><\/a><\/li><li><a href=\"http:\/\/www.bndmr.fr\/informations-legales\/\" target=\"_blank\" rel=\"noopener\"><strong>Informations L\u00e9gales et Note d\u2019information individuelle <\/strong><strong>BNDMR<\/strong><\/a><u><\/u><\/li><\/ul><p>\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-1012\" class=\"elementor-tab-title\" data-tab=\"2\" role=\"button\" aria-controls=\"elementor-tab-content-1012\" 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\"><i class=\"fas fa-plus\"><\/i><\/span>\n\t\t\t\t\t\t\t\t<span class=\"elementor-accordion-icon-opened\"><i class=\"fas fa-minus\"><\/i><\/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\">Exercer mes droits<\/a>\n\t\t\t\t\t<\/div>\n\t\t\t\t\t<div id=\"elementor-tab-content-1012\" class=\"elementor-tab-content elementor-clearfix\" data-tab=\"2\" role=\"region\" aria-labelledby=\"elementor-tab-title-1012\"><ul><li><a href=\"http:\/\/www.bndmr.fr\/transparence\/mes-droits\/\" target=\"_blank\" rel=\"noopener\"><strong>Exercer mon droit d\u2019opposition<\/strong><\/a><\/li><\/ul><\/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-1013\" class=\"elementor-tab-title\" data-tab=\"3\" role=\"button\" aria-controls=\"elementor-tab-content-1013\" 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\"><i class=\"fas fa-plus\"><\/i><\/span>\n\t\t\t\t\t\t\t\t<span class=\"elementor-accordion-icon-opened\"><i class=\"fas fa-minus\"><\/i><\/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\">\u00c9tudes en cours ou r\u00e9alis\u00e9es<\/a>\n\t\t\t\t\t<\/div>\n\t\t\t\t\t<div id=\"elementor-tab-content-1013\" class=\"elementor-tab-content elementor-clearfix\" data-tab=\"3\" role=\"region\" aria-labelledby=\"elementor-tab-title-1013\"><ul><li><a href=\"http:\/\/www.bndmr.fr\/espace-patients\/transparence\/\" target=\"_blank\" rel=\"noopener\"><strong>\u00c9tudes en cours ou r\u00e9alis\u00e9es<\/strong><\/a><\/li><\/ul><\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\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-7924802 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"7924802\" data-element_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-ea1657c\" data-id=\"ea1657c\" data-element_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-89bce23 elementor-widget elementor-widget-heading\" data-id=\"89bce23\" data-element_type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t<style>\/*! elementor - v3.23.0 - 15-07-2024 *\/\n.elementor-heading-title{padding:0;margin:0;line-height:1}.elementor-widget-heading .elementor-heading-title[class*=elementor-size-]>a{color:inherit;font-size:inherit;line-height:inherit}.elementor-widget-heading .elementor-heading-title.elementor-size-small{font-size:15px}.elementor-widget-heading .elementor-heading-title.elementor-size-medium{font-size:19px}.elementor-widget-heading .elementor-heading-title.elementor-size-large{font-size:29px}.elementor-widget-heading .elementor-heading-title.elementor-size-xl{font-size:39px}.elementor-widget-heading .elementor-heading-title.elementor-size-xxl{font-size:59px}<\/style><h2 class=\"elementor-heading-title elementor-size-default\">Documents utiles<\/h2>\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<section class=\"elementor-section elementor-inner-section elementor-element elementor-element-882e0d6 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"882e0d6\" data-element_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-33 elementor-inner-column elementor-element elementor-element-a95b832\" data-id=\"a95b832\" data-element_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-f83b9f2 elementor-cta--valign-middle elementor-cta--skin-classic elementor-animated-content elementor-bg-transform elementor-bg-transform-zoom-in elementor-widget elementor-widget-call-to-action\" data-id=\"f83b9f2\" data-element_type=\"widget\" data-widget_type=\"call-to-action.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t<link rel=\"stylesheet\" href=\"https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-content\/plugins\/elementor-pro\/assets\/css\/widget-call-to-action.min.css?ver=1721048726\">\t\t<div class=\"elementor-cta\">\n\t\t\t\t\t\t\t<div class=\"elementor-cta__content\">\n\t\t\t\t\n\t\t\t\t\n\t\t\t\t\t\t\t\t\t<div class=\"elementor-cta__description elementor-cta__content-item elementor-content-item\">\n\t\t\t\t\t\tCentre maladies rares : <br \/>information sur l\u2019utilisation des donn\u00e9es personnelles<br \/><br \/>\t\t\t\t\t<\/div>\n\t\t\t\t\n\t\t\t\t\t\t\t\t\t<div class=\"elementor-cta__button-wrapper elementor-cta__content-item elementor-content-item \">\n\t\t\t\t\t<a class=\"elementor-cta__button elementor-button elementor-size-\" href=\"\/pemr-cvl\/wp-content\/uploads\/sites\/15\/2023\/05\/2.10-2023_Affiche_info_Patients_BaMaRa.pdf\" target=\"_blank\">\n\t\t\t\t\t\tT\u00e9l\u00e9chargez le document\t\t\t\t\t<\/a>\n\t\t\t\t\t<\/div>\n\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t\t\t<div class=\"elementor-ribbon\">\n\t\t\t\t<div class=\"elementor-ribbon-inner\">PDF<\/div>\n\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\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-33 elementor-inner-column elementor-element elementor-element-da20541\" data-id=\"da20541\" data-element_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<div class=\"elementor-column elementor-col-33 elementor-inner-column elementor-element elementor-element-5ac4e80\" data-id=\"5ac4e80\" data-element_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-b22eb64 elementor-cta--valign-middle elementor-cta--skin-classic elementor-animated-content elementor-bg-transform elementor-bg-transform-zoom-in elementor-widget elementor-widget-call-to-action\" data-id=\"b22eb64\" data-element_type=\"widget\" data-widget_type=\"call-to-action.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<div class=\"elementor-cta\">\n\t\t\t\t\t\t\t<div class=\"elementor-cta__content\">\n\t\t\t\t\n\t\t\t\t\n\t\t\t\t\t\t\t\t\t<div class=\"elementor-cta__description elementor-cta__content-item elementor-content-item\">\n\t\t\t\t\t\tS\u00e9curit\u00e9 et confidentialit\u00e9<br \/>de vos donn\u00e9es<br \/>dans la BNDMR<br \/>\t\t\t\t\t<\/div>\n\t\t\t\t\n\t\t\t\t\t\t\t\t\t<div class=\"elementor-cta__button-wrapper elementor-cta__content-item elementor-content-item \">\n\t\t\t\t\t<a class=\"elementor-cta__button elementor-button elementor-size-\" href=\"\/pemr-cvl\/wp-content\/uploads\/sites\/15\/2023\/05\/2.10-NI-patient-BNDMR-1-page.pdf\" target=\"_blank\">\n\t\t\t\t\t\tT\u00e9l\u00e9chargez le document\t\t\t\t\t<\/a>\n\t\t\t\t\t<\/div>\n\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t\t\t<div class=\"elementor-ribbon\">\n\t\t\t\t<div class=\"elementor-ribbon-inner\">PDF<\/div>\n\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\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\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-4910dba elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"4910dba\" data-element_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-df89583\" data-id=\"df89583\" data-element_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-cac75ab elementor-widget elementor-widget-heading\" data-id=\"cac75ab\" data-element_type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t<h2 class=\"elementor-heading-title elementor-size-default\">Liens utiles<\/h2>\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<section class=\"elementor-section elementor-inner-section elementor-element elementor-element-d340ab8 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"d340ab8\" data-element_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-inner-column elementor-element elementor-element-d540e99\" data-id=\"d540e99\" data-element_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-f48463e elementor-flip-box--effect-flip elementor-flip-box--direction-up elementor-widget elementor-widget-flip-box\" data-id=\"f48463e\" data-element_type=\"widget\" data-widget_type=\"flip-box.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t<link rel=\"stylesheet\" href=\"https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-content\/plugins\/elementor-pro\/assets\/css\/widget-flip-box.min.css?ver=1721048726\">\t\t<div class=\"elementor-flip-box\" tabindex=\"0\">\n\t\t\t<div class=\"elementor-flip-box__layer elementor-flip-box__front\">\n\t\t\t\t<div class=\"elementor-flip-box__layer__overlay\">\n\t\t\t\t\t<div class=\"elementor-flip-box__layer__inner\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t<div class=\"elementor-icon-wrapper elementor-view-default\">\n\t\t\t\t\t\t\t\t<div class=\"elementor-icon\">\n\t\t\t\t\t\t\t\t\t<i class=\"fas fa-external-link-alt\"><\/i>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t\t\n\t\t\t\t\t\t\n\t\t\t\t\t\t\t\t\t\t\t\t\t<div class=\"elementor-flip-box__layer__description\">\n\t\t\t\t\t\t\t\tBNDMR\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t<\/div>\n\t\t\t<div class=\"elementor-flip-box__layer elementor-flip-box__back\">\n\t\t\t<div class=\"elementor-flip-box__layer__overlay\">\n\t\t\t\t<div class=\"elementor-flip-box__layer__inner\">\n\t\t\t\t\t\n\t\t\t\t\t\n\t\t\t\t\t\t\t\t\t\t\t<a class=\"elementor-flip-box__button elementor-button elementor-size-sm\" href=\"http:\/\/www.bndmr.fr\/participer\/guides-et-bonnes-pratiques\/information-patient-bamara\/\" target=\"_blank\">\n\t\t\t\t\t\t\t>> Consulter le site\t\t\t\t\t\t<\/a>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t<\/div>\n\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-inner-column elementor-element elementor-element-7cd008b\" data-id=\"7cd008b\" data-element_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-98b9442 elementor-flip-box--effect-flip elementor-flip-box--direction-up elementor-widget elementor-widget-flip-box\" data-id=\"98b9442\" data-element_type=\"widget\" data-widget_type=\"flip-box.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<div class=\"elementor-flip-box\" tabindex=\"0\">\n\t\t\t<div class=\"elementor-flip-box__layer elementor-flip-box__front\">\n\t\t\t\t<div class=\"elementor-flip-box__layer__overlay\">\n\t\t\t\t\t<div class=\"elementor-flip-box__layer__inner\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t<div class=\"elementor-icon-wrapper elementor-view-default\">\n\t\t\t\t\t\t\t\t<div class=\"elementor-icon\">\n\t\t\t\t\t\t\t\t\t<i class=\"fas fa-external-link-alt\"><\/i>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t\t\n\t\t\t\t\t\t\n\t\t\t\t\t\t\t\t\t\t\t\t\t<div class=\"elementor-flip-box__layer__description\">\n\t\t\t\t\t\t\t\tNote d\u2019information individuelle BNDMR \t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t<\/div>\n\t\t\t<div class=\"elementor-flip-box__layer elementor-flip-box__back\">\n\t\t\t<div class=\"elementor-flip-box__layer__overlay\">\n\t\t\t\t<div class=\"elementor-flip-box__layer__inner\">\n\t\t\t\t\t\n\t\t\t\t\t\n\t\t\t\t\t\t\t\t\t\t\t<a class=\"elementor-flip-box__button elementor-button elementor-size-sm\" href=\"http:\/\/www.bndmr.fr\/informations-legales\/\" target=\"_blank\">\n\t\t\t\t\t\t\t>> Consulter le site\t\t\t\t\t\t<\/a>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t<\/div>\n\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-inner-column elementor-element elementor-element-63848d0\" data-id=\"63848d0\" data-element_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-1e2557c elementor-flip-box--effect-flip elementor-flip-box--direction-up elementor-widget elementor-widget-flip-box\" data-id=\"1e2557c\" data-element_type=\"widget\" data-widget_type=\"flip-box.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<div class=\"elementor-flip-box\" tabindex=\"0\">\n\t\t\t<div class=\"elementor-flip-box__layer elementor-flip-box__front\">\n\t\t\t\t<div class=\"elementor-flip-box__layer__overlay\">\n\t\t\t\t\t<div class=\"elementor-flip-box__layer__inner\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t<div class=\"elementor-icon-wrapper elementor-view-default\">\n\t\t\t\t\t\t\t\t<div class=\"elementor-icon\">\n\t\t\t\t\t\t\t\t\t<i class=\"fas fa-external-link-alt\"><\/i>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t\t\n\t\t\t\t\t\t\n\t\t\t\t\t\t\t\t\t\t\t\t\t<div class=\"elementor-flip-box__layer__description\">\n\t\t\t\t\t\t\t\t\u00c9tudes en cours ou r\u00e9alis\u00e9es \t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t<\/div>\n\t\t\t<div class=\"elementor-flip-box__layer elementor-flip-box__back\">\n\t\t\t<div class=\"elementor-flip-box__layer__overlay\">\n\t\t\t\t<div class=\"elementor-flip-box__layer__inner\">\n\t\t\t\t\t\n\t\t\t\t\t\n\t\t\t\t\t\t\t\t\t\t\t<a class=\"elementor-flip-box__button elementor-button elementor-size-sm\" href=\"http:\/\/www.bndmr.fr\/transparence\/\" target=\"_blank\">\n\t\t\t\t\t\t\t>> Consulter le site\t\t\t\t\t\t<\/a>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t<\/div>\n\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-inner-column elementor-element elementor-element-283cdaa\" data-id=\"283cdaa\" data-element_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-bb6a491 elementor-flip-box--effect-flip elementor-flip-box--direction-up elementor-widget elementor-widget-flip-box\" data-id=\"bb6a491\" data-element_type=\"widget\" data-widget_type=\"flip-box.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<div class=\"elementor-flip-box\" tabindex=\"0\">\n\t\t\t<div class=\"elementor-flip-box__layer elementor-flip-box__front\">\n\t\t\t\t<div class=\"elementor-flip-box__layer__overlay\">\n\t\t\t\t\t<div class=\"elementor-flip-box__layer__inner\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t<div class=\"elementor-icon-wrapper elementor-view-default\">\n\t\t\t\t\t\t\t\t<div class=\"elementor-icon\">\n\t\t\t\t\t\t\t\t\t<i class=\"fas fa-external-link-alt\"><\/i>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t\t\n\t\t\t\t\t\t\n\t\t\t\t\t\t\t\t\t\t\t\t\t<div class=\"elementor-flip-box__layer__description\">\n\t\t\t\t\t\t\t\tExercer mon droit d\u2019opposition \t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t<\/div>\n\t\t\t<div class=\"elementor-flip-box__layer elementor-flip-box__back\">\n\t\t\t<div class=\"elementor-flip-box__layer__overlay\">\n\t\t\t\t<div class=\"elementor-flip-box__layer__inner\">\n\t\t\t\t\t\n\t\t\t\t\t\n\t\t\t\t\t\t\t\t\t\t\t<a class=\"elementor-flip-box__button elementor-button elementor-size-sm\" href=\"http:\/\/www.bndmr.fr\/transparence\/mes-droits\/\" target=\"_blank\">\n\t\t\t\t\t\t\t>> Consulter le site\t\t\t\t\t\t<\/a>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t<\/div>\n\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\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>La Banque Nationale de Donn\u00e9es Maladies Rares (BNDMR) est une base de donn\u00e9es nationale, s\u00e9curis\u00e9e, mise en place par le minist\u00e8re de la sant\u00e9 dans le cadre du Plan National Maladies Rares 2. \u00a0Cette base vise \u00e0 \u00e9tablir une collection de donn\u00e9es homog\u00e8nes pour l&#8217;ensemble des maladies rares afin d\u2019am\u00e9liorer les connaissances \u00e9pid\u00e9miologiques par un [&hellip;]<\/p>\n","protected":false},"author":4,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_seopress_robots_primary_cat":"","_seopress_titles_title":"Recherche sur les maladies rares. BNDMR : en quoi suis-je concern\u00e9\u00b7e ?","_seopress_titles_desc":"La Banque Nationale de Donn\u00e9es Maladies Rares (BNDMR) est une base de donn\u00e9es nationale, s\u00e9curis\u00e9e, mise en place par le minist\u00e8re de la sant\u00e9 dans le cadre du Plan National Maladies Rares 2.  Cette base vise \u00e0 \u00e9tablir une collection de donn\u00e9es homog\u00e8nes pour l&#039;ensemble des maladies rares afin d\u2019am\u00e9liorer les connaissances \u00e9pid\u00e9miologiques par un meilleur recensement et alimenter des travaux de recherche clinique.","_seopress_robots_index":"","_exactmetrics_skip_tracking":false,"_exactmetrics_sitenote_active":false,"_exactmetrics_sitenote_note":"","_exactmetrics_sitenote_category":0,"_genesis_hide_title":false,"_genesis_hide_breadcrumbs":false,"_genesis_hide_singular_image":false,"_genesis_hide_footer_widgets":false,"_genesis_custom_body_class":"","_genesis_custom_post_class":"","_genesis_layout":"","footnotes":""},"publishpress_future_action":{"enabled":false,"date":"2026-04-22 06:47:17","action":"change-status","newStatus":"draft","terms":[],"taxonomy":""},"_links":{"self":[{"href":"https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-json\/wp\/v2\/pages\/683"}],"collection":[{"href":"https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-json\/wp\/v2\/users\/4"}],"replies":[{"embeddable":true,"href":"https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-json\/wp\/v2\/comments?post=683"}],"version-history":[{"count":53,"href":"https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-json\/wp\/v2\/pages\/683\/revisions"}],"predecessor-version":[{"id":1383,"href":"https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-json\/wp\/v2\/pages\/683\/revisions\/1383"}],"wp:attachment":[{"href":"https:\/\/www.chu-tours.fr\/pemr-cvl\/wp-json\/wp\/v2\/media?parent=683"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}