{"id":7337,"date":"2025-11-14T19:37:35","date_gmt":"2025-11-14T18:37:35","guid":{"rendered":"https:\/\/reseau-amylose.org\/jesuissoignant\/?p=7337"},"modified":"2026-02-19T15:27:33","modified_gmt":"2026-02-19T14:27:33","slug":"reseau-grace-publication-registre-hear","status":"publish","type":"post","link":"https:\/\/reseau-amylose.org\/jesuissoignant\/reseau-grace-publication-registre-hear\/","title":{"rendered":"Publication scientifique : le registre HEAR et le R\u00e9seau F-CRIN GRACE au service de la recherche sur l\u2019amylose cardiaque"},"content":{"rendered":"\t\t<div data-elementor-type=\"wp-post\" data-elementor-id=\"7337\" class=\"elementor elementor-7337\" data-elementor-post-type=\"post\">\n\t\t\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-a65c9e4 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"a65c9e4\" 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-7e11a1f\" data-id=\"7e11a1f\" 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-dc59fcb elementor-widget elementor-widget-heading\" data-id=\"dc59fcb\" data-element_type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h1 class=\"elementor-heading-title elementor-size-default\">Publication scientifique : le registre HEAR et le R\u00e9seau F-CRIN GRACE au service de la recherche sur l\u2019amylose cardiaque<\/h1>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-4cfeb64 elementor-widget elementor-widget-text-editor\" data-id=\"4cfeb64\" 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\t\t<p data-start=\"852\" data-end=\"1225\">Une \u00e9tape d\u00e9cisive vient d\u2019\u00eatre franchie pour la recherche sur l\u2019amylose cardiaque en France et en Europe. Le <strong data-start=\"962\" data-end=\"999\">Orphanet Journal of Rare Diseases<\/strong> a publi\u00e9 un article majeur pr\u00e9sentant la structure, les objectifs et l\u2019ambition du <strong data-start=\"1083\" data-end=\"1134\">Healthcare Amyloidosis European Registry (HEAR)<\/strong>.<\/p><p data-start=\"1227\" data-end=\"1574\">Ce registre constitue la base scientifique et op\u00e9rationnelle du <strong data-start=\"1291\" data-end=\"1370\">R\u00e9seau F-CRIN GRACE (Group for Research on Amyloidosis and Care Excellence)<\/strong>, d\u00e9j\u00e0 labellis\u00e9 par F-CRIN, dont la vocation est de f\u00e9d\u00e9rer les centres experts, harmoniser les pratiques, soutenir la recherche et am\u00e9liorer la prise en charge des patients atteints d\u2019amylose cardiaque.<\/p><p data-start=\"1576\" data-end=\"1785\">Cette publication marque une reconnaissance forte du travail engag\u00e9 par les \u00e9quipes fran\u00e7aises et l\u2019ensemble du R\u00e9seau Amylose pour d\u00e9velopper une recherche robuste, collaborative et tourn\u00e9e vers l\u2019innovation et l&rsquo;Europe.<\/p>\t\t\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-69a4e83 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"69a4e83\" 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-adbd418\" data-id=\"adbd418\" 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-d78e01c elementor-widget elementor-widget-heading\" data-id=\"d78e01c\" data-element_type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h2 class=\"elementor-heading-title elementor-size-default\">Pourquoi le R\u00e9seau F-CRIN GRACE est une avanc\u00e9e majeure<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-1e0db62 elementor-widget elementor-widget-text-editor\" data-id=\"1e0db62\" 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\t\t<p data-start=\"2762\" data-end=\"2881\">La publication scientifique officialise \u00e9galement la structuration du <strong data-start=\"2832\" data-end=\"2848\">R\u00e9seau GRACE<\/strong>, labellis\u00e9 F-CRIN.<br data-start=\"2867\" data-end=\"2870\" \/>Ce r\u00e9seau :<\/p><ul><li data-start=\"2885\" data-end=\"2938\">f\u00e9d\u00e8re les centres experts de l\u2019amylose en France ;<\/li><li data-start=\"2885\" data-end=\"2938\">b\u00e9n\u00e9ficie d\u2019un soutien institutionnel (F-CRIN \/ E-CRIN) pour harmoniser les pratiques ;<\/li><li data-start=\"2885\" data-end=\"2938\">structure la recherche clinique et favorise les essais th\u00e9rapeutiques ;<\/li><li data-start=\"2885\" data-end=\"2938\">d\u00e9veloppe des outils technologiques innovants (IA, centralisation d\u2019imagerie MIRACL.ai, questionnaires sp\u00e9cialis\u00e9s) ;<\/li><li data-start=\"2885\" data-end=\"2938\">renforce la visibilit\u00e9 internationale de la France dans le domaine de l\u2019amylose.<\/li><\/ul><p data-start=\"3313\" data-end=\"3466\"><strong data-start=\"3313\" data-end=\"3322\">GRACE<\/strong> devient ainsi un cadre de r\u00e9f\u00e9rence pour coordonner la recherche, renforcer les collaborations et am\u00e9liorer la qualit\u00e9 des donn\u00e9es recueillies.<\/p>\t\t\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-76890e8 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"76890e8\" 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-42b4cf5\" data-id=\"42b4cf5\" 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-410a19f elementor-widget elementor-widget-heading\" data-id=\"410a19f\" data-element_type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h2 class=\"elementor-heading-title elementor-size-default\">Un registre pour mieux comprendre l\u2019amylose cardiaque<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-5c902b2 elementor-widget elementor-widget-text-editor\" data-id=\"5c902b2\" 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\t\t<p>Le registre <strong data-start=\"1886\" data-end=\"1894\">HEAR<\/strong> est con\u00e7u pour r\u00e9pondre \u00e0 un besoin majeur :<\/p><ul><li data-start=\"1874\" data-end=\"2191\"><em data-start=\"1945\" data-end=\"1987\">mieux d\u00e9crire les parcours de diagnostic<\/em>, souvent tardifs,<\/li><li data-start=\"1874\" data-end=\"2191\"><em data-start=\"2011\" data-end=\"2062\">documenter les traitements utilis\u00e9s en vie r\u00e9elle<\/em>,<\/li><li data-start=\"1874\" data-end=\"2191\"><em data-start=\"2069\" data-end=\"2103\">suivre l\u2019\u00e9volution de la maladie<\/em>,<\/li><li data-start=\"1874\" data-end=\"2191\"><em data-start=\"2110\" data-end=\"2139\">int\u00e9grer la voix du patient<\/em> gr\u00e2ce aux questionnaires de qualit\u00e9 de vie (PROMs).<\/li><\/ul><p data-start=\"2193\" data-end=\"2402\">Avec <strong data-start=\"2198\" data-end=\"2236\">34 centres experts de l&rsquo;amylose fran\u00e7ais d\u00e9j\u00e0 impliqu\u00e9s<\/strong> et une ouverture pr\u00e9vue \u00e0 d\u2019autres pays europ\u00e9ens, HEAR compte fin 2025 plus de 8 900 patients inclus, couvrant toutes les formes d\u2019amylose cardiaque :<\/p><ul><li data-start=\"2405\" data-end=\"2429\">ATTR sauvage (ATTRwt),<\/li><li data-start=\"2405\" data-end=\"2429\">ATTR h\u00e9r\u00e9ditaire (ATTRv),<\/li><li data-start=\"2405\" data-end=\"2429\">amylose AL,<\/li><li data-start=\"2405\" data-end=\"2429\">formes plus rares.<\/li><\/ul><p data-start=\"2494\" data-end=\"2688\">Ce registre se distingue par son ambition europ\u00e9enne, son exhaustivit\u00e9 et son approche \u00ab patient-centr\u00e9e \u00bb, int\u00e9grant des innovations num\u00e9riques comme un chatbot d\u2019\u00e9ducation et d\u2019accompagnement.<\/p>\t\t\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-9f68950 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"9f68950\" 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-59bdce4\" data-id=\"59bdce4\" 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-38b8d28 elementor-widget elementor-widget-heading\" data-id=\"38b8d28\" data-element_type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h2 class=\"elementor-heading-title elementor-size-default\">Une collecte de donn\u00e9es ambitieuse, rigoureuse et orient\u00e9e vers le patient<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-19993a0 elementor-widget elementor-widget-text-editor\" data-id=\"19993a0\" 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\t\t<p data-start=\"1756\" data-end=\"1794\">HEAR recueille :<\/p><ul><li data-start=\"1797\" data-end=\"1860\">des donn\u00e9es d\u00e9mographiques, cliniques, biologiques et g\u00e9n\u00e9tiques,<\/li><li data-start=\"1797\" data-end=\"1860\">des imagerie multimodale (\u00e9chocardiographie, IRM, scintigraphie),<\/li><li data-start=\"1797\" data-end=\"1860\">des traitements cardiologiques et sp\u00e9cifiques de l\u2019amylose,<\/li><li data-start=\"1797\" data-end=\"1860\">des \u00e9v\u00e9nements cardiaques et extracardiaques,<\/li><li data-start=\"1797\" data-end=\"1860\">des hospitalisations,<\/li><li data-start=\"1797\" data-end=\"1860\">des questionnaires de qualit\u00e9 de vie (AmyloAFFECT-QoL, MLHFQ, KCCQ).<\/li><\/ul><p data-start=\"2123\" data-end=\"2244\">Les donn\u00e9es sont saisies dans un <strong data-start=\"2156\" data-end=\"2177\">e-CRF standardis\u00e9<\/strong>, contr\u00f4l\u00e9es r\u00e9guli\u00e8rement et v\u00e9rifi\u00e9es via des tests de coh\u00e9rence.<\/p>\t\t\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-259d190 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"259d190\" 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-3db0840\" data-id=\"3db0840\" 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-3b15264 elementor-widget elementor-widget-heading\" data-id=\"3b15264\" data-element_type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h2 class=\"elementor-heading-title elementor-size-default\">Un outil cl\u00e9 pour acc\u00e9l\u00e9rer la recherche clinique<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-a76c594 elementor-widget elementor-widget-text-editor\" data-id=\"a76c594\" 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\t\t<p data-start=\"4381\" data-end=\"4450\">Le registre HEAR, int\u00e9gr\u00e9 au r\u00e9seau GRACE, repr\u00e9sente un socle pour :<\/p><ul><li data-start=\"4454\" data-end=\"4532\">identifier plus rapidement les patients \u00e9ligibles aux essais th\u00e9rapeutiques,<\/li><li data-start=\"4454\" data-end=\"4532\">\u00e9valuer l\u2019impact des nouveaux traitements dans la vraie vie,<\/li><li data-start=\"4454\" data-end=\"4532\">guider les strat\u00e9gies de prise en charge,<\/li><li data-start=\"4454\" data-end=\"4532\">soutenir les autorit\u00e9s sanitaires et les soci\u00e9t\u00e9s savantes.<\/li><\/ul><p data-start=\"4707\" data-end=\"4901\">L\u2019article rappelle notamment que le registre a d\u00e9j\u00e0 permis d\u2019\u00e9valuer l\u2019impact du <strong data-start=\"4788\" data-end=\"4801\">tafamidis<\/strong> sur la survie des patients de plus de 80 ans, d\u00e9montrant la valeur concr\u00e8te des donn\u00e9es collect\u00e9es.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-aa7907a elementor-widget elementor-widget-text-editor\" data-id=\"aa7907a\" 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\t\t<p data-start=\"4927\" data-end=\"5124\">La publication du registre <strong data-start=\"4954\" data-end=\"4962\">HEAR<\/strong> et la structuration du <strong data-start=\"4986\" data-end=\"5009\">R\u00e9seau F-CRIN GRACE<\/strong> constituent une avanc\u00e9e scientifique majeure pour la compr\u00e9hension et la prise en charge de l\u2019amylose cardiaque.<\/p><p data-start=\"5126\" data-end=\"5387\">En rassemblant les donn\u00e9es de milliers de patients, en harmonisant les pratiques et en int\u00e9grant les innovations technologiques, GRACE s\u2019impose comme un acteur europ\u00e9en incontournable pour am\u00e9liorer le diagnostic, la qualit\u00e9 de vie et le pronostic des patients atteints d&rsquo;amylose.<\/p><p data-start=\"5389\" data-end=\"5565\">Cette dynamique renforce consid\u00e9rablement la mission du <strong data-start=\"5445\" data-end=\"5463\">R\u00e9seau Amylose<\/strong>, qui s\u2019appuie d\u00e9sormais sur un outil scientifique solide, collaboratif et reconnu internationalement.<\/p>\t\t\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-e3353d5 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"e3353d5\" 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-16 elementor-top-column elementor-element elementor-element-c8dd2e1\" data-id=\"c8dd2e1\" 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-66 elementor-top-column elementor-element elementor-element-5cdce62\" data-id=\"5cdce62\" 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-b7c4247 elementor-widget elementor-widget-image\" data-id=\"b7c4247\" data-element_type=\"widget\" data-widget_type=\"image.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<a href=\"https:\/\/reseau-amylose.org\/jesuissoignant\/wp-content\/uploads\/sites\/5\/2025\/11\/13023_2025_Article_4062.pdf\" target=\"_blank\">\n\t\t\t\t\t\t\t<img fetchpriority=\"high\" decoding=\"async\" width=\"1024\" height=\"933\" src=\"https:\/\/reseau-amylose.org\/jesuissoignant\/wp-content\/uploads\/sites\/5\/2025\/11\/HEAR-F-CRIN-GRACE-orphanet-1024x933.jpg\" class=\"attachment-large size-large wp-image-7686\" alt=\"HEAR-FCRIN-GRACE-Orphanet\" srcset=\"https:\/\/reseau-amylose.org\/jesuissoignant\/wp-content\/uploads\/sites\/5\/2025\/11\/HEAR-F-CRIN-GRACE-orphanet-1024x933.jpg 1024w, https:\/\/reseau-amylose.org\/jesuissoignant\/wp-content\/uploads\/sites\/5\/2025\/11\/HEAR-F-CRIN-GRACE-orphanet-300x273.jpg 300w, https:\/\/reseau-amylose.org\/jesuissoignant\/wp-content\/uploads\/sites\/5\/2025\/11\/HEAR-F-CRIN-GRACE-orphanet-768x700.jpg 768w, https:\/\/reseau-amylose.org\/jesuissoignant\/wp-content\/uploads\/sites\/5\/2025\/11\/HEAR-F-CRIN-GRACE-orphanet.jpg 1324w\" sizes=\"(max-width: 1024px) 100vw, 1024px\" \/>\t\t\t\t\t\t\t\t<\/a>\n\t\t\t\t\t\t\t\t\t\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<div class=\"elementor-column elementor-col-16 elementor-top-column elementor-element elementor-element-ccdcd43\" data-id=\"ccdcd43\" 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\t<\/div>\n\t\t<\/section>\n\t\t\t\t<\/div>\n\t\t","protected":false},"excerpt":{"rendered":"<p>Publication scientifique : le registre HEAR et le R\u00e9seau F-CRIN GRACE au service de la recherche sur l\u2019amylose cardiaque Une \u00e9tape d\u00e9cisive vient d\u2019\u00eatre franchie pour la recherche sur l\u2019amylose cardiaque en France et en Europe. Le Orphanet Journal of Rare Diseases a publi\u00e9 un article majeur pr\u00e9sentant la structure, les objectifs et l\u2019ambition du [&hellip;]<\/p>\n","protected":false},"author":2,"featured_media":7686,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[1],"tags":[],"class_list":["post-7337","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-non-classe"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v25.5 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Publication - registre HEAR et R\u00e9seau GRACE<\/title>\n<meta name=\"description\" content=\"D\u00e9couvrez la publication du registre HEAR et R\u00e9seau F-CRIN GRACE, une avanc\u00e9e pour la recherche et la prise en charge de l\u2019amylose cardiaque.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/reseau-amylose.org\/jesuissoignant\/reseau-grace-publication-registre-hear\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Publication - 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