{"id":10375,"date":"2026-07-14T23:32:59","date_gmt":"2026-07-15T03:32:59","guid":{"rendered":"https:\/\/loeysdietzcanada.org\/?page_id=10375"},"modified":"2026-07-15T00:41:40","modified_gmt":"2026-07-15T04:41:40","slug":"connect-hctd","status":"publish","type":"page","link":"https:\/\/loeysdietzcanada.org\/fr\/connect-hctd\/","title":{"rendered":"Connect-HCTD"},"content":{"rendered":"\t\t<div data-elementor-type=\"wp-page\" data-elementor-id=\"10375\" class=\"elementor elementor-10375 elementor-10374\" data-elementor-post-type=\"page\">\n\t\t\t\t\t\t<section data-particle_enable=\"false\" data-particle-mobile-disabled=\"false\" class=\"elementor-section elementor-top-section elementor-element elementor-element-4387367 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"4387367\" 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-top-column elementor-element elementor-element-243eaa7\" data-id=\"243eaa7\" 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<section data-particle_enable=\"false\" data-particle-mobile-disabled=\"false\" class=\"elementor-section elementor-top-section elementor-element elementor-element-761eaf31 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"761eaf31\" 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-top-column elementor-element elementor-element-6c6c47b3\" data-id=\"6c6c47b3\" 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-49148e28 elementor-widget elementor-widget-heading\" data-id=\"49148e28\" data-element_type=\"widget\" data-e-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\">Connect-HCTD<\/h1>\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 data-particle_enable=\"false\" data-particle-mobile-disabled=\"false\" class=\"elementor-section elementor-top-section elementor-element elementor-element-1f40c5a5 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"1f40c5a5\" 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-top-column elementor-element elementor-element-5056e4ca\" data-id=\"5056e4ca\" 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-60dd3ece elementor-widget elementor-widget-heading\" data-id=\"60dd3ece\" data-element_type=\"widget\" data-e-type=\"widget\" id=\"canact\" 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\">Comprendre le parcours de vie avec un trouble h\u00e9r\u00e9ditaire du tissu conjonctif<br>\nUn programme de recherche ax\u00e9 sur les patients<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-6b2bbb80 elementor-widget elementor-widget-heading\" data-id=\"6b2bbb80\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h3 class=\"elementor-heading-title elementor-size-default\">\u00c0 propos du projet<\/h3>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-21f692c4 elementor-widget elementor-widget-spacer\" data-id=\"21f692c4\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"spacer.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<div class=\"elementor-spacer\">\n\t\t\t<div class=\"elementor-spacer-inner\"><\/div>\n\t\t<\/div>\n\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 data-particle_enable=\"false\" data-particle-mobile-disabled=\"false\" class=\"elementor-section elementor-top-section elementor-element elementor-element-8f83cb1 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"8f83cb1\" 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-50 elementor-top-column elementor-element elementor-element-5196169b\" data-id=\"5196169b\" 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-4cdbadc0 elementor-widget__width-initial elementor-widget elementor-widget-text-editor\" data-id=\"4cdbadc0\" data-element_type=\"widget\" data-e-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>Vivre avec un trouble h\u00e9r\u00e9ditaire du tissu conjonctif (THTC), comme le syndrome de Loeys-Dietz, le syndrome de Marfan ou le syndrome d&rsquo;Ehlers-Danlos, signifie souvent devoir naviguer dans un syst\u00e8me de sant\u00e9 complexe tout en g\u00e9rant une maladie qui touche de nombreux aspects de la vie quotidienne.<\/p><p>Bien que ces maladies soient chroniques, multisyst\u00e9miques et \u00e9volutives, on conna\u00eet encore peu la mani\u00e8re dont les personnes les vivent au fil du temps, comment les soins de sant\u00e9 s&rsquo;int\u00e8grent \u00e0 leur parcours de vie et o\u00f9 persistent les principales lacunes dans les services offerts.<\/p><p>Ce programme de recherche vise \u00e0 mieux comprendre l&rsquo;exp\u00e9rience v\u00e9cue des personnes atteintes d&rsquo;un trouble h\u00e9r\u00e9ditaire du tissu conjonctif afin de produire des connaissances et des outils qui permettront d&rsquo;am\u00e9liorer les soins, de soutenir les personnes atteintes et leurs proches, et d&rsquo;\u00e9clairer les professionnels de la sant\u00e9 ainsi que les d\u00e9cideurs.<\/p><p>Le projet est r\u00e9alis\u00e9 en partenariat avec des personnes vivant avec un THTC, des cliniciens, des chercheurs et des organismes de patients, dont la Fondation canadienne du syndrome de Loeys-Dietz.<\/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<div class=\"elementor-column elementor-col-50 elementor-top-column elementor-element elementor-element-79005fee\" data-id=\"79005fee\" 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-1d1d2bb7 elementor-widget elementor-widget-image\" data-id=\"1d1d2bb7\" data-element_type=\"widget\" data-e-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<img fetchpriority=\"high\" decoding=\"async\" width=\"1024\" height=\"1024\" src=\"https:\/\/loeysdietzcanada.org\/wp-content\/uploads\/2026\/07\/connect_hctd_logo_BIL-1024x1024.png\" class=\"attachment-large size-large wp-image-10382\" alt=\"\" srcset=\"https:\/\/loeysdietzcanada.org\/wp-content\/uploads\/2026\/07\/connect_hctd_logo_BIL-1024x1024.png 1024w, https:\/\/loeysdietzcanada.org\/wp-content\/uploads\/2026\/07\/connect_hctd_logo_BIL-300x300.png 300w, https:\/\/loeysdietzcanada.org\/wp-content\/uploads\/2026\/07\/connect_hctd_logo_BIL-150x150.png 150w, https:\/\/loeysdietzcanada.org\/wp-content\/uploads\/2026\/07\/connect_hctd_logo_BIL-768x768.png 768w, https:\/\/loeysdietzcanada.org\/wp-content\/uploads\/2026\/07\/connect_hctd_logo_BIL-1536x1536.png 1536w, https:\/\/loeysdietzcanada.org\/wp-content\/uploads\/2026\/07\/connect_hctd_logo_BIL.png 2000w\" sizes=\"(max-width: 1024px) 100vw, 1024px\" \/>\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\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section data-particle_enable=\"false\" data-particle-mobile-disabled=\"false\" class=\"elementor-section elementor-top-section elementor-element elementor-element-3f207b2e elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"3f207b2e\" 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-top-column elementor-element elementor-element-1a30d774\" data-id=\"1a30d774\" 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-763cd507 elementor-widget elementor-widget-heading\" data-id=\"763cd507\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h3 class=\"elementor-heading-title elementor-size-default\">Objectifs du programme de recherche<\/h3>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-2606faae elementor-widget elementor-widget-spacer\" data-id=\"2606faae\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"spacer.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<div class=\"elementor-spacer\">\n\t\t\t<div class=\"elementor-spacer-inner\"><\/div>\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-21a8302c elementor-widget elementor-widget-text-editor\" data-id=\"21a8302c\" data-element_type=\"widget\" data-e-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><span style=\"color: black;\">Ce programme de recherche s&rsquo;articule autour de trois objectifs compl\u00e9mentaires.<\/span><\/p><h5><span lang=\"FR-CA\" style=\"color: black;\">Objectif 1<br \/><\/span><span lang=\"FR-CA\" style=\"color: black;\">Comprendre les recommandations cliniques<\/span><\/h5><p>La premi\u00e8re \u00e9tape consiste \u00e0 r\u00e9aliser une revue syst\u00e9matique des lignes directrices internationales de pratique clinique portant sur le syndrome de Marfan, le syndrome de Loeys-Dietz et les syndromes d&rsquo;Ehlers-Danlos.<\/p><p>Cette revue vise \u00e0 :<\/p><ul><li>recenser les recommandations existantes concernant le diagnostic, le traitement et la prise en charge des sympt\u00f4mes;<\/li><li>\u00e9valuer la qualit\u00e9 m\u00e9thodologique des lignes directrices disponibles;<\/li><li>examiner la participation des patients \u00e0 leur \u00e9laboration;<\/li><li>identifier les principales lacunes dans les donn\u00e9es probantes susceptibles de limiter l&rsquo;acc\u00e8s \u00e0 des soins de grande qualit\u00e9.<\/li><\/ul><p><strong>Consultez la base de donn\u00e9es compl\u00e8te des recommandations cliniques :<\/strong><br \/><a href=\"https:\/\/airtable.com\/app3S29kg3K6e7DLw\/shrkCQX1WXWTV8Mdu\">https:\/\/airtable.com\/app3S29kg3K6e7DLw\/shrkCQX1WXWTV8Mdu<\/a><\/p><p><strong style=\"font-size: 1.2em;\">Objectif 2<\/strong><\/p><h5>Comprendre le parcours de vie des personnes vivant avec un trouble h\u00e9r\u00e9ditaire du tissu conjonctif<\/h5><p>\u00c0 l&rsquo;aide d&rsquo;entrevues narratives et de la cartographie du parcours de vie, ce projet cherche \u00e0 comprendre comment l&rsquo;exp\u00e9rience de vivre avec un trouble h\u00e9r\u00e9ditaire du tissu conjonctif \u00e9volue au fil du temps.<\/p><p>La recherche explore notamment :<\/p><ul><li>comment les sympt\u00f4mes apparaissent, \u00e9voluent et sont pris en charge tout au long de la vie;<\/li><li>comment les exp\u00e9riences de soins interagissent avec les \u00e9tudes, le travail, la vie familiale, les relations et les autres sph\u00e8res de la vie;<\/li><li>comment les obstacles aux soins apparaissent et \u00e9voluent aux diff\u00e9rentes \u00e9tapes du parcours de vie.<\/li><\/ul><p>Plut\u00f4t que de s&rsquo;int\u00e9resser uniquement au syst\u00e8me de sant\u00e9, ce projet examine le parcours global des personnes vivant avec ces maladies.<\/p><p><strong>Vous \u00eates actuellement admissible \u00e0 participer si vous \u00eates un adulte ayant re\u00e7u un diagnostic de syndrome de Loeys-Dietz, de syndrome de Marfan ou de syndrome d&rsquo;Ehlers-Danlos et ayant re\u00e7u des soins de sant\u00e9 au Canada.<\/strong><\/p><p>Inscrivez-vous ici :<br \/><a href=\"https:\/\/redcap.link\/thtc\">https:\/\/redcap.link\/thtc<\/a><\/p><h5><strong>Objectif 3<br \/><\/strong>Identifier des occasions d&rsquo;am\u00e9liorer les soins<\/h5><p>En s&rsquo;appuyant sur les cartes du parcours de vie \u00e9labor\u00e9es avec les participants, la derni\u00e8re phase du projet vise \u00e0 d\u00e9terminer comment les syst\u00e8mes de sant\u00e9 peuvent mieux r\u00e9pondre aux besoins des personnes vivant avec un trouble h\u00e9r\u00e9ditaire du tissu conjonctif.<\/p><p>Plus pr\u00e9cis\u00e9ment, le projet cherche \u00e0 :<\/p><ul><li>identifier les besoins non combl\u00e9s tout au long du parcours de vie;<\/li><li>comprendre les obstacles rencontr\u00e9s par les patients dans le syst\u00e8me de sant\u00e9;<\/li><li>identifier des strat\u00e9gies permettant de r\u00e9duire ces obstacles;<\/li><li>d\u00e9terminer les moments les plus propices du parcours de vie pour offrir des interventions et du soutien.<\/li><\/ul><p>Ultimement, ce projet vise \u00e0 favoriser des soins mieux coordonn\u00e9s, fond\u00e9s sur les donn\u00e9es probantes et r\u00e9alis\u00e9s en partenariat avec les patients. Il m\u00e8nera \u00e9galement au d\u00e9veloppement d&rsquo;une application servant de feuille de route afin d&rsquo;aider les personnes atteintes \u00e0 naviguer leur parcours avec la maladie et \u00e0 acc\u00e9der, au bon moment, aux ressources dont elles ont besoin.<\/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 data-particle_enable=\"false\" data-particle-mobile-disabled=\"false\" class=\"elementor-section elementor-top-section elementor-element elementor-element-20a2b977 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"20a2b977\" 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-top-column elementor-element elementor-element-af4d87\" data-id=\"af4d87\" 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-56ba581d elementor-widget elementor-widget-spacer\" data-id=\"56ba581d\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"spacer.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<div class=\"elementor-spacer\">\n\t\t\t<div class=\"elementor-spacer-inner\"><\/div>\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-29eb4a52 elementor-widget elementor-widget-heading\" data-id=\"29eb4a52\" data-element_type=\"widget\" data-e-type=\"widget\" id=\"leap\" 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 approche partenariale<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-5b951ad0 elementor-widget elementor-widget-text-editor\" data-id=\"5b951ad0\" data-element_type=\"widget\" data-e-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>Les personnes vivant avec un trouble h\u00e9r\u00e9ditaire du tissu conjonctif sont partenaires \u00e0 toutes les \u00e9tapes de cette recherche.<\/p><p>Patients, proches aidants, cliniciens et organismes communautaires contribuent \u00e0 :<\/p><ul><li>identifier les priorit\u00e9s de recherche;<\/li><li>pr\u00e9ciser les questions de recherche;<\/li><li>interpr\u00e9ter les r\u00e9sultats;<\/li><li>co-d\u00e9velopper les futurs outils de transfert des connaissances.<\/li><\/ul><p>Leur exp\u00e9rience v\u00e9cue est reconnue comme une expertise essentielle.<\/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 data-particle_enable=\"false\" data-particle-mobile-disabled=\"false\" class=\"elementor-section elementor-top-section elementor-element elementor-element-705318c2 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"705318c2\" 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-top-column elementor-element elementor-element-36a7a09f\" data-id=\"36a7a09f\" 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-7daa060f elementor-widget elementor-widget-heading\" data-id=\"7daa060f\" data-element_type=\"widget\" data-e-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\">De la recherche \u00e0 l'action<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-6b6bdaca elementor-widget elementor-widget-text-editor\" data-id=\"6b6bdaca\" data-element_type=\"widget\" data-e-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>Ce projet vise \u00e0 produire des ressources concr\u00e8tes pouvant b\u00e9n\u00e9ficier directement \u00e0 la communaut\u00e9 des troubles h\u00e9r\u00e9ditaires du tissu conjonctif.<\/p><p>Les activit\u00e9s pr\u00e9vues de transfert des connaissances comprennent notamment :<\/p><ul><li>une base de donn\u00e9es compl\u00e8te des recommandations cliniques;<\/li><li>des r\u00e9sum\u00e9s vulgaris\u00e9s des r\u00e9sultats de recherche;<\/li><li>des cartes visuelles illustrant le parcours de vie avec un trouble h\u00e9r\u00e9ditaire du tissu conjonctif;<\/li><li>des recommandations pour am\u00e9liorer les services de sant\u00e9;<\/li><li>un Parcours d&rsquo;apprentissage patient bilingue, co-d\u00e9velopp\u00e9 avec des patients et des cliniciens afin de soutenir la compr\u00e9hension de la maladie, la navigation dans le syst\u00e8me de sant\u00e9 et l&rsquo;autogestion;<\/li><li>des conf\u00e9rences destin\u00e9es aux patients, aux proches aidants et aux professionnels de la sant\u00e9.<\/li><\/ul>\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 data-particle_enable=\"false\" data-particle-mobile-disabled=\"false\" class=\"elementor-section elementor-top-section elementor-element elementor-element-13db84b9 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"13db84b9\" 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-top-column elementor-element elementor-element-2beefa5e\" data-id=\"2beefa5e\" 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-62785786 elementor-widget elementor-widget-heading\" data-id=\"62785786\" data-element_type=\"widget\" data-e-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\">Participez au projet<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-524e52b7 elementor-widget elementor-widget-text-editor\" data-id=\"524e52b7\" data-element_type=\"widget\" data-e-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>Plusieurs occasions de participer seront offertes tout au long du projet.<\/p><p>Vous pouvez :<\/p><ul><li>participer \u00e0 titre de participant \u00e0 la recherche;<\/li><li>contribuer \u00e0 la co-construction des outils de transfert des connaissances;<\/li><li>rester inform\u00e9 des avanc\u00e9es du projet.<\/li><\/ul><p>Ensemble, nous souhaitons d\u00e9velopper des outils qui refl\u00e8tent les r\u00e9alit\u00e9s et les priorit\u00e9s des personnes vivant avec un trouble h\u00e9r\u00e9ditaire du tissu conjonctif.<\/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 data-particle_enable=\"false\" data-particle-mobile-disabled=\"false\" class=\"elementor-section elementor-top-section elementor-element elementor-element-21969c28 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"21969c28\" 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-66e92115\" data-id=\"66e92115\" 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-30aad8bf elementor-widget elementor-widget-heading\" data-id=\"30aad8bf\" data-element_type=\"widget\" data-e-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\">\u00c9quipe de recherche<\/h2>\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 data-particle_enable=\"false\" data-particle-mobile-disabled=\"false\" class=\"elementor-section elementor-top-section elementor-element elementor-element-482dc52a elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"482dc52a\" 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-5216cf9a\" data-id=\"5216cf9a\" 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-7ab2cc55 elementor-widget__width-initial elementor-widget elementor-widget-text-editor\" data-id=\"7ab2cc55\" data-element_type=\"widget\" data-e-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<h5><span lang=\"FR-CA\" style=\"color: black;\">Coordonnatrice du projet<\/span><\/h5><p><strong><span style=\"color: black;\">Catherine C\u00f4t\u00e9, M. Sc.<\/span><\/strong><span style=\"color: black;\"><br \/>Candidate au doctorat en psychologie clinique<br \/>Universit\u00e9 de Montr\u00e9al<br \/>Centre de recherche du CHUM<\/span><\/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-7c1426cb elementor-widget__width-initial elementor-widget elementor-widget-text-editor\" data-id=\"7c1426cb\" data-element_type=\"widget\" data-e-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<h5><span lang=\"FR-CA\" style=\"color: black;\">Cochercheurs et cochercheuses<\/span><\/h5><p>Dr Hance Clarke<br \/>Audrey L&rsquo;Esp\u00e9rance<br \/>Dre Anne-Marie Laberge<br \/>Ana\u00efs Lacasse<br \/>Dre Marie-Pascale Pomey<br \/>Matthew Menear<\/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<div class=\"elementor-column elementor-col-50 elementor-top-column elementor-element elementor-element-683bd29a\" data-id=\"683bd29a\" 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-59c50ca2 elementor-widget__width-initial elementor-widget elementor-widget-text-editor\" data-id=\"59c50ca2\" data-element_type=\"widget\" data-e-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<h5><span lang=\"FR-CA\" style=\"color: black;\">Chercheuse principale<\/span><\/h5><p><strong><span style=\"color: black;\">Gabrielle Pag\u00e9, Ph. D.<\/span><\/strong><span style=\"color: black;\"><br \/>Universit\u00e9 de Montr\u00e9al<br \/>Centre de recherche du CHUM<\/span><\/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-37b76b07 elementor-widget__width-initial elementor-widget elementor-widget-text-editor\" data-id=\"37b76b07\" data-element_type=\"widget\" data-e-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<h5><span lang=\"FR-CA\" style=\"color: black;\">Collaborateurs<\/span><\/h5><p>Dre Camille Laflamme<br \/>\u00c9lise Develay<\/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-2ed05ade elementor-widget__width-initial elementor-widget elementor-widget-text-editor\" data-id=\"2ed05ade\" data-element_type=\"widget\" data-e-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<h5><span lang=\"FR-CA\" style=\"color: black;\">Partenaires patients<\/span><\/h5><p>Annie-Danielle Grenier<br \/>Sylvie Beaudoin<br \/>Miza\u00ebl Bilodeau<\/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 data-particle_enable=\"false\" data-particle-mobile-disabled=\"false\" class=\"elementor-section elementor-top-section elementor-element elementor-element-4f77c3d9 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"4f77c3d9\" 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-3b527d0c\" data-id=\"3b527d0c\" 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-35b85947 elementor-widget__width-initial elementor-widget elementor-widget-text-editor\" data-id=\"35b85947\" data-element_type=\"widget\" data-e-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<h5><span lang=\"FR-CA\" style=\"color: black;\">Partenaires communautaires<\/span><\/h5><ul><li>Fondation canadienne du syndrome de Loeys-Dietz<\/li><li>Centre d&rsquo;excellence sur le partenariat avec les patients et le public (<a href=\"https:\/\/ceppp.ca\/\">https:\/\/ceppp.ca<\/a>)<\/li><li>Fondation EDS Canada (<a href=\"https:\/\/edscanada.org\/\">https:\/\/edscanada.org<\/a>)<\/li><li>Genetic Aortic Disorders Association Canada (GADA) (<a href=\"https:\/\/www.gadacanada.ca\/\">https:\/\/www.gadacanada.ca<\/a>)<\/li><li>Constellation \u2013 Troubles h\u00e9r\u00e9ditaires du tissu conjonctif (<a href=\"https:\/\/www.facebook.com\/constellationthtc\">https:\/\/www.facebook.com\/constellationthtc<\/a>)<\/li><\/ul>\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-56da3515 elementor-widget__width-initial elementor-widget elementor-widget-text-editor\" data-id=\"56da3515\" data-element_type=\"widget\" data-e-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<h5><span lang=\"FR-CA\" style=\"color: black;\">Financement<\/span><\/h5><p>Titre: <em><strong>Vivre avec une maladie complexe, multisyst\u00e9mique et douloureuse : Cartographier le parcours de vie avec un trouble h\u00e9r\u00e9ditaire du tissu conjonctif pour d\u00e9velopper un parcours d&rsquo;apprentissage patients.<\/strong>\u00a0<\/em><\/p><p style=\"padding-left: 40px;\"><strong><span style=\"color: black;\">Chercheuse principale :<\/span><\/strong><span class=\"apple-converted-space\"><span style=\"color: black;\">\u00a0<\/span><\/span><span style=\"color: black;\">Gabrielle Pag\u00e9<br \/><\/span><strong><span style=\"color: black;\">Candidats principaux :<\/span><\/strong><span class=\"apple-converted-space\"><span style=\"color: black;\">\u00a0<\/span><\/span><span style=\"color: black;\">Annie-Danielle Grenier<br \/><\/span><strong><span style=\"color: black;\">Cochercheurs :<\/span><\/strong><span class=\"apple-converted-space\"><span style=\"color: black;\">\u00a0<\/span><\/span><span style=\"color: black;\">Miza\u00ebl Bilodeau, Dr Hance Clarke, Catherine C\u00f4t\u00e9, Audrey L&rsquo;Esp\u00e9rance, Dre Anne-Marie Laberge, Ana\u00efs Lacasse, Dre Marie-Pascale Pomey, Matthew Menear<br \/><\/span><strong><span style=\"color: black;\">Collaborateurs :<\/span><\/strong><span class=\"apple-converted-space\"><span style=\"color: black;\">\u00a0<\/span><\/span><span style=\"color: black;\">\u00c9lise Develay, Dre Camille Laflamme<br \/><\/span><strong><span style=\"color: black;\">Financement :<\/span><\/strong><span class=\"apple-converted-space\"><span style=\"color: black;\">\u00a0<\/span><\/span><span style=\"color: black;\">397 800 $<br \/>Subvention Projet des Instituts de recherche en sant\u00e9 du Canada (IRSC)<br \/><\/span><strong><span style=\"color: black;\">Comit\u00e9 :<\/span><\/strong><span class=\"apple-converted-space\"><span style=\"color: black;\">\u00a0<\/span><\/span><span style=\"color: black;\">Recherche en interventions et en \u00e9valuation dans les services de sant\u00e9 2 (HS2)<\/span><\/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-6674aad6 elementor-widget__width-initial elementor-widget elementor-widget-text-editor\" data-id=\"6674aad6\" data-element_type=\"widget\" data-e-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>Titre: <strong><em>Hereditary Connective Tissue Disorder: Reviewing existing clinical guidelines and co-constructing the first stage of a patient mapping journey.<\/em><\/strong><\/p><p style=\"padding-left: 40px;\"><strong><span style=\"color: black;\">Chercheuse principale :<\/span><\/strong><span class=\"apple-converted-space\"><span style=\"color: black;\">\u00a0<\/span><\/span><span style=\"color: black;\">Gabrielle Pag\u00e9<br \/><\/span><strong><span style=\"color: black;\">Cochercheurs :<\/span><\/strong><span class=\"apple-converted-space\"><span style=\"color: black;\">\u00a0<\/span><\/span><span style=\"color: black;\">Catherine C\u00f4t\u00e9, Annie-Danielle Grenier, Caroline H\u00e9bert, Dr Hance Clarke, Audrey L&rsquo;Esp\u00e9rance, Ana\u00efs Lacasse, Dre Marie-Pascale Pomey<br \/><\/span><strong><span style=\"color: black;\">Collaborateurs :<\/span><\/strong><span class=\"apple-converted-space\"><span style=\"color: black;\">\u00a0<\/span><\/span><span style=\"color: black;\">Miza\u00ebl Bilodeau, \u00c9lise Develay, Dre Anne-Marie Laberge, Dre Camille Laflamme<br \/><\/span><strong><span style=\"color: black;\">Financement :<\/span><\/strong><span class=\"apple-converted-space\"><span style=\"color: black;\">\u00a0<\/span><\/span><span style=\"color: black;\">50 000 $<br \/>Subvention de planification et de diss\u00e9mination \u2013 Programme d&rsquo;appui communautaire des Instituts de recherche en sant\u00e9 du Canada (2024\u20132025)<\/span><\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-28e7c564 elementor-widget__width-initial elementor-widget elementor-widget-text-editor\" data-id=\"28e7c564\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p>Titre : <em><strong>Soutenir l&rsquo;autogestion, l&rsquo;organisation et l&rsquo;int\u00e9gration des soins : d\u00e9veloppement et impl\u00e9mentation d&rsquo;un parcours d&rsquo;apprentissage patient pour les troubles h\u00e9r\u00e9ditaires du tissu conjonctif<\/strong><\/em><\/p><p style=\"padding-left: 40px;\"><strong>Financement :<\/strong> 50 000$<br \/><strong>Ann\u00e9e :<\/strong> 2026<br \/><strong>Programme :<\/strong> Bourse d\u2019impact sur le syst\u00e8me de sant\u00e9 \u2013 Instituts de recherche en sant\u00e9 du Canada (IRSC)<\/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-2f46a4e9 elementor-widget__width-initial elementor-widget elementor-widget-text-editor\" data-id=\"2f46a4e9\" data-element_type=\"widget\" data-e-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<h5><strong>Contact<\/strong><\/h5><p><span style=\"color: black;\">Pour toute question concernant le projet ou les possibilit\u00e9s de participation, veuillez communiquer avec :<br \/><\/span><strong>Catherine C\u00f4t\u00e9\u00a0:<\/strong> <a href=\"mailto:catherine.cote.13@umontreal.ca\">catherine.cote.13@umontreal.ca<\/a><br \/><i style=\"font-weight: inherit;\"><span style=\"font-family: 'Calibri',sans-serif; color: black;\">Inscrivez-vous \u00e0 notre infolettre pour recevoir des mises \u00e0 jour\u00a0sur le projet CONNECT-THTC :<span class=\"apple-converted-space\">\u00a0<\/span><\/span><\/i><span style=\"color: #3366ff;\"><a style=\"font-style: inherit; font-weight: inherit; background-color: #f8f8f8; color: #3366ff;\" title=\"Original URL: https:\/\/mailchi.mp\/fea8157d7177\/pcp Click to follow link.\" href=\"https:\/\/mailchi.mp\/fea8157d7177\/pcp\" target=\"_blank\" rel=\"noopener\"><i><span style=\"font-family: Calibri, sans-serif;\">https:\/\/mailchi.mp\/fea8157d7177\/pcp<\/span><\/i><\/a><\/span><\/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<\/div>\n\t\t","protected":false},"excerpt":{"rendered":"<p>Connect-HCTD Comprendre le parcours de vie avec un trouble h\u00e9r\u00e9ditaire du tissu conjonctif Un programme de recherche ax\u00e9 sur les patients \u00c0 propos du projet Vivre avec un trouble h\u00e9r\u00e9ditaire [&hellip;]<\/p>\n","protected":false},"author":5,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"om_disable_all_campaigns":false,"_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"site-sidebar-layout":"no-sidebar","site-content-layout":"page-builder","ast-site-content-layout":"full-width-container","site-content-style":"unboxed","site-sidebar-style":"unboxed","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":"default","header-above-stick-meta":"","header-main-stick-meta":"on","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 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