{"id":9395,"date":"2024-08-07T17:16:08","date_gmt":"2024-08-07T17:16:08","guid":{"rendered":"https:\/\/www.rawoodfoundation.org\/?p=9395"},"modified":"2024-08-07T20:42:27","modified_gmt":"2024-08-07T20:42:27","slug":"regsitry-security","status":"publish","type":"post","link":"https:\/\/www.rawoodfoundation.org\/fr\/2024\/08\/07\/regsitry-security\/","title":{"rendered":"Comprendre la s\u00e9curit\u00e9 des donn\u00e9es dans le registre des patients atteints de tumeurs c\u00e9r\u00e9brales hypothalamo-hypophysaires"},"content":{"rendered":"<p>Lorsqu'il s'agit de partager des informations personnelles sur la sant\u00e9, les pr\u00e9occupations relatives \u00e0 la s\u00e9curit\u00e9 des donn\u00e9es sont primordiales, en particulier au sein de la communaut\u00e9 des patients. Ici, \u00e0 la Fondation Raymond A. Wood, nous accordons la priorit\u00e9 \u00e0 la s\u00e9curit\u00e9 et \u00e0 la confidentialit\u00e9 de vos donn\u00e9es. Nous tenons \u00e0 vous assurer que le registre des patients atteints de tumeurs c\u00e9r\u00e9brales hypothalamo-hypophysaires est une plateforme s\u00e9curis\u00e9e h\u00e9berg\u00e9e sur la plateforme de la National Organization for Rare Disorders (NORD). Ce registre adh\u00e8re \u00e0 des directives gouvernementales strictes afin de garantir la plus grande protection des informations relatives aux patients.<\/p>\n\n\n\n<figure class=\"wp-block-embed is-type-video is-provider-youtube wp-block-embed-youtube wp-embed-aspect-16-9 wp-has-aspect-ratio\"><div class=\"wp-block-embed__wrapper\">\n<iframe title=\"Garantir la s\u00e9curit\u00e9 des donn\u00e9es dans le registre des patients atteints de tumeurs c\u00e9r\u00e9brales hypothalamo-hypophysaires\" width=\"1200\" height=\"675\" src=\"https:\/\/www.youtube.com\/embed\/muwXWbRPiaU?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe>\n<\/div><\/figure>\n\n\n\n<h4 class=\"wp-block-heading\">Comment nous assurons la s\u00e9curit\u00e9 des donn\u00e9es<\/h4>\n\n\n\n<p>La plateforme est conforme \u00e0 plusieurs r\u00e9glementations essentielles en mati\u00e8re de protection de la vie priv\u00e9e et de s\u00e9curit\u00e9 des donn\u00e9es, notamment :<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>Lois am\u00e9ricaines sur la protection de la vie priv\u00e9e dans le domaine de la sant\u00e9<\/strong>: HIPAA, HITECH et FISMA<\/li>\n\n\n\n<li><strong>Lois nationales sur la protection de la vie priv\u00e9e<\/strong>: Le cas \u00e9ch\u00e9ant<\/li>\n\n\n\n<li><strong>R\u00e9glementation de la FDA sur les enregistrements \u00e9lectroniques<\/strong>21CFR Part 11<\/li>\n\n\n\n<li><strong>Directive sur les donn\u00e9es de l'Union europ\u00e9enne et r\u00e8glement g\u00e9n\u00e9ral sur la protection des donn\u00e9es (RGPD).<\/strong><\/li>\n<\/ul>\n\n\n\n<p>Depuis que NORD a lanc\u00e9 son premier registre de patients en 2014, il a h\u00e9berg\u00e9 plus de 60 registres sans qu'aucune violation de donn\u00e9es ni aucun incident n'ait compromis la s\u00e9curit\u00e9 des donn\u00e9es des participants.<\/p>\n\n\n\n<h4 class=\"wp-block-heading\">Approbation du conseil de r\u00e9glementation institutionnel<\/h4>\n\n\n\n<p>Le protocole et les proc\u00e9dures du registre des patients atteints de tumeurs c\u00e9r\u00e9brales hypothalamo-hypophysaires ont \u00e9t\u00e9 examin\u00e9s et approuv\u00e9s par un comit\u00e9 de r\u00e9glementation institutionnel (IRB), en l'occurrence le North Star Review Board. Cet examen garantit que toutes les recherches sur des sujets humains sont men\u00e9es conform\u00e9ment aux directives f\u00e9d\u00e9rales, institutionnelles et \u00e9thiques.<\/p>\n\n\n\n<h4 class=\"wp-block-heading\">Chiffrement et mesures de s\u00e9curit\u00e9 des donn\u00e9es<\/h4>\n\n\n\n<p>La plate-forme utilise le protocole HTTPS pour garantir que les donn\u00e9es sont crypt\u00e9es lorsqu'elles sont transmises de votre navigateur aux serveurs de NORD. En outre, les donn\u00e9es stock\u00e9es dans la base de donn\u00e9es de NORD (donn\u00e9es au repos) sont crypt\u00e9es. Toutes les communications entre le serveur d'application de la plate-forme de registre et la base de donn\u00e9es sont \u00e9galement crypt\u00e9es. Bien que toute information \u00e9lectronique comporte un risque minimal de compromission de la vie priv\u00e9e, les mesures de s\u00e9curit\u00e9 rigoureuses mises en place minimisent consid\u00e9rablement ce risque.<\/p>\n\n\n\n<h4 class=\"wp-block-heading\">D\u00e9sidentification et partage des donn\u00e9es<\/h4>\n\n\n\n<p>Les informations que vous fournissez sont d\u00e9personnalis\u00e9es, c'est-\u00e0-dire que toutes les informations personnelles sur la sant\u00e9 sont supprim\u00e9es et que les donn\u00e9es sont regroup\u00e9es avec celles des autres participants. En r\u00e8gle g\u00e9n\u00e9rale, seules les donn\u00e9es d\u00e9personnalis\u00e9es sont communiqu\u00e9es aux chercheurs, aux entreprises qui d\u00e9veloppent des traitements ou \u00e0 d'autres parties. Dans les rares cas o\u00f9 la recherche ne peut se faire sans informations personnelles sur la sant\u00e9, ces donn\u00e9es ne seront partag\u00e9es qu'apr\u00e8s approbation du comit\u00e9 consultatif du registre, conform\u00e9ment aux protocoles approuv\u00e9s par l'IRB.<\/p>\n\n\n\n<h4 class=\"wp-block-heading\">Importance de l'exactitude des informations personnelles<\/h4>\n\n\n\n<p>Il est essentiel de saisir des informations personnelles correctes. Le formulaire de consentement \u00e0 la participation est un document l\u00e9gal qui doit \u00eatre sign\u00e9 avec votre vrai nom. Des donn\u00e9es exactes garantissent la fiabilit\u00e9 des r\u00e9sultats de la recherche et permettent aux patients et aux soignants de se faire entendre de mani\u00e8re cr\u00e9dible par les prestataires de soins de sant\u00e9, les scientifiques et les organismes de r\u00e9glementation. Des informations incorrectes, comme une date de naissance inexacte, peuvent compromettre la cr\u00e9ation de num\u00e9ros d'identification cruciaux tels que le CRID ou le GUID, qui relient les informations m\u00e9dicales entre diff\u00e9rentes bases de donn\u00e9es sans partager d'informations personnelles sur la sant\u00e9.<\/p>\n\n\n\n<h4 class=\"wp-block-heading\">Stockage et propri\u00e9t\u00e9 des donn\u00e9es<\/h4>\n\n\n\n<p>NORD stocke les donn\u00e9es des registres des sponsors et des participants sur des serveurs crypt\u00e9s au Canada, avec des sauvegardes r\u00e9guli\u00e8res. Ces serveurs r\u00e9pondent aux normes du secteur et sont conformes aux r\u00e9glementations am\u00e9ricaines et internationales, y compris le GDPR. Les donn\u00e9es sont la propri\u00e9t\u00e9 de la Fondation Raymond A. Wood, qui d\u00e9cide comment et avec qui les partager. Le personnel de NORD n'acc\u00e8de aux donn\u00e9es que pour l'assistance et la maintenance de la plateforme.<\/p>\n\n\n\n<h4 class=\"wp-block-heading\">Acc\u00e8s aux informations de sant\u00e9 prot\u00e9g\u00e9es (PHI)<\/h4>\n\n\n\n<p>L'acc\u00e8s aux PHI est limit\u00e9 aux membres approuv\u00e9s de l'\u00e9quipe de recherche et au personnel des NORD, si une assistance technique est n\u00e9cessaire et avec l'autorisation du personnel du registre. Toutes les demandes de donn\u00e9es sont \u00e9valu\u00e9es par le comit\u00e9 consultatif du registre, qui veille \u00e0 ce que les chercheurs ne re\u00e7oivent que les donn\u00e9es minimales n\u00e9cessaires \u00e0 leurs \u00e9tudes.<\/p>\n\n\n\n<h4 class=\"wp-block-heading\">Consid\u00e9rations relatives au GDPR<\/h4>\n\n\n\n<p>Pour nos participants dans l'Union europ\u00e9enne et en Suisse, nous offrons les m\u00eames protections de la vie priv\u00e9e qu'aux \u00c9tats-Unis, ainsi que des droits suppl\u00e9mentaires en vertu du GDPR. Il s'agit notamment du droit d'acc\u00e9der, de rectifier ou d'effacer les donn\u00e9es personnelles, de recevoir les donn\u00e9es dans un format portable, de restreindre ou de retirer le consentement au traitement des donn\u00e9es et de d\u00e9poser des plaintes aupr\u00e8s des autorit\u00e9s de contr\u00f4le.<\/p>\n\n\n\n<p>Pour de plus amples informations, veuillez consulter la section FAQ de <a href=\"https:\/\/www.rawoodfoundation.org\/fr\/registre-des-tumeurs\/\">Registre des patients atteints de tumeurs c\u00e9r\u00e9brales hypothalamo-hypophysaires<\/a> sur ce site. Votre vie priv\u00e9e et votre confiance sont de la plus haute importance pour nous, et nous nous engageons \u00e0 prot\u00e9ger vos informations.<\/p>","protected":false},"excerpt":{"rendered":"<p>Lorsqu'il s'agit de partager des informations personnelles sur la sant\u00e9, les pr\u00e9occupations relatives \u00e0 la s\u00e9curit\u00e9 des donn\u00e9es sont primordiales, en particulier ... <a title=\"Comprendre la s\u00e9curit\u00e9 des donn\u00e9es dans le registre des patients atteints de tumeurs c\u00e9r\u00e9brales hypothalamo-hypophysaires\" class=\"read-more\" href=\"https:\/\/www.rawoodfoundation.org\/fr\/2024\/08\/07\/regsitry-security\/\" aria-label=\"En savoir plus sur la s\u00e9curit\u00e9 des donn\u00e9es dans le registre des patients atteints de tumeurs c\u00e9r\u00e9brales hypothalamo-hypophysaires\">Lire plus<\/a><\/p>","protected":false},"author":6,"featured_media":9396,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[20],"tags":[],"class_list":["post-9395","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-latest-research","generate-columns","tablet-grid-50","mobile-grid-100","grid-parent","grid-33","no-featured-image-padding"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.5 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Understanding Data Security in the Hypothalamic-Pituitary Brain Tumors Patient Registry - Raymond A. 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