{"id":62037,"date":"2020-03-31T15:22:44","date_gmt":"2020-03-31T19:22:44","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/document-de-consensus-utilisation-et-avantages-pour-les-patients\/"},"modified":"2025-08-23T17:15:52","modified_gmt":"2025-08-23T21:15:52","slug":"document-de-consensus-utilisation-et-avantages-pour-les-patients","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/fr\/document-de-consensus-utilisation-et-avantages-pour-les-patients\/","title":{"rendered":"Document de consensus : Utilisation et avantages pour les patients"},"content":{"rendered":"<p aria-level=\"4\"><b><span data-contrast=\"auto\">Qu&rsquo;est-ce qu&rsquo;un consensus ?<\/span><\/b><span data-ccp-props=\"{\"134233117\":true,\"134233118\":true,\"201341983\":0,\"335559740\":240}\">&nbsp;<\/span><\/p>\n<p><span data-contrast=\"auto\">Un consensus m\u00e9dical est un rapport sur un sujet sp\u00e9cifique, tel que Erdheim-Chester une maladie, par un groupe d&rsquo;experts m\u00e9dicaux qui ont une connaissance particuli\u00e8re de la maladie. Ce groupe d&rsquo;experts s&rsquo;accorde sur des connaissances fond\u00e9es sur des preuves et sur l&rsquo;\u00e9tat de la science. Son principal objectif est de conseiller les m\u00e9decins sur la meilleure fa\u00e7on possible et acceptable de diagnostiquer et de traiter certaines maladies ou sur la fa\u00e7on d&rsquo;aborder un domaine d\u00e9cisionnel particulier. Il s&rsquo;agit g\u00e9n\u00e9ralement d&rsquo;une expression communautaire d&rsquo;un processus consensuel de prise de d\u00e9cision et de publication.   <\/span><span data-ccp-props=\"{\"201341983\":0,\"335559739\":160,\"335559740\":259}\">&nbsp;<\/span><\/p>\n<p aria-level=\"4\"><b><span data-contrast=\"auto\">Pourquoi un consensus sur les soins de sant\u00e9 est-il important et que signifie-t-il pour les patients atteints d&rsquo;une maladie ? Erdheim-Chester patients atteints d&rsquo;une maladie ?<\/span><\/b><span data-ccp-props=\"{\"134233117\":true,\"134233118\":true,\"201341983\":0,\"335559740\":240}\">&nbsp;<\/span><\/p>\n<p><span data-contrast=\"auto\">Erdheim-Chester La maladie (ECD) est si rare que son diagnostic peut prendre des mois, voire des ann\u00e9es. Une fois le diagnostic pos\u00e9, le processus de traitement commence, qui peut \u00e9galement \u00eatre assez long. <\/span><span data-ccp-props=\"{\"201341983\":0,\"335559739\":160,\"335559740\":259}\">&nbsp;<\/span><\/p>\n<p><span data-contrast=\"auto\">Gr\u00e2ce aux efforts combin\u00e9s des principaux professionnels m\u00e9dicaux de ECD dans le monde entier, un nouveau rapport de consensus ECD a \u00e9t\u00e9 cr\u00e9\u00e9 pour att\u00e9nuer certaines des complexit\u00e9s auxquelles les m\u00e9decins traitants sont confront\u00e9s.<\/span><span data-ccp-props=\"{\"201341983\":0,\"335559739\":160,\"335559740\":259}\">&nbsp;<\/span><\/p>\n<p aria-level=\"4\"><b><span data-contrast=\"auto\">Qu&rsquo;est-ce que cela signifie pour les patients du site ECD?<\/span><\/b><span data-ccp-props=\"{\"134233117\":true,\"134233118\":true,\"201341983\":0,\"335559740\":240}\">&nbsp;<\/span><\/p>\n<p><span data-contrast=\"auto\">L&rsquo;objectif du consensus est d&rsquo;aider \u00e0 am\u00e9liorer le diagnostic, le traitement et la qualit\u00e9 de vie globale des patients atteints de maladies infectieuses en servant de lignes directrices aux professionnels de la sant\u00e9 qui traitent les patients. Erdheim-Chester en servant de lignes directrices aux professionnels de la sant\u00e9 qui traitent les patients.<\/span><span data-ccp-props=\"{\"201341983\":0,\"335559739\":160,\"335559740\":259}\">&nbsp;<\/span><\/p>\n<p><span data-contrast=\"auto\">En tant que patient ou membre de la famille, vous pouvez partager le lien vers le document de consensus avec vos \u00e9quipes m\u00e9dicales. Faites part de vos r\u00e9flexions et de vos questions sur votre traitement actuel et sur la mani\u00e8re dont il s&rsquo;aligne sur le nouveau document de consensus. <\/span><span data-ccp-props=\"{\"201341983\":0,\"335559739\":160,\"335559740\":259}\">&nbsp;<\/span><\/p>\n<p><strong><a href=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2020\/06\/ECD-guidelines_Blood-2020.pdf\" target=\"_blank\" rel=\"noopener noreferrer\">Les derni\u00e8res lignes directrices consensuelles publi\u00e9es sont disponibles ICI.<\/a><\/strong><\/p>\n<p><span data-contrast=\"auto\">Si vous avez d&rsquo;autres questions ou pr\u00e9occupations concernant le dernier document de consensus, contactez votre m\u00e9decin du centre de soins ECD ou l&rsquo;\u00e9quipe de l&rsquo;Alliance mondiale ECD.<\/span><span data-ccp-props=\"{\"201341983\":0,\"335559739\":160,\"335559740\":259}\"> <strong>Nous esp\u00e9rons que vous partagerez ces informations avec votre \u00e9quipe m\u00e9dicale.&nbsp;&nbsp;<\/strong><\/span><\/p>\n<h3>&nbsp;<\/h3>\n<h3><strong>Pour en savoir plus, consultez les enregistrements de ces webinaires :<\/strong><\/h3>\n<p><span data-ccp-props=\"{\"201341983\":0,\"335559739\":160,\"335559740\":259}\"> <a href=\"https:\/\/www.youtube.com\/watch?v=WwKnvklM22w\" target=\"_blank\" rel=\"https:\/\/www.youtube.com\/watch?v=WwKnvklM22w noopener noreferrer\"><img loading=\"lazy\" decoding=\"async\" class=\"alignleft wp-image-19579 size-medium\" src=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2020\/03\/Copy-of-Pro-consensus-webinar-ANNOUNCEMENT-WEBSITE-300x300.png\" alt=\"\" width=\"300\" height=\"300\" srcset=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2020\/03\/Copy-of-Pro-consensus-webinar-ANNOUNCEMENT-WEBSITE-300x300.png 300w, https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2020\/03\/Copy-of-Pro-consensus-webinar-ANNOUNCEMENT-WEBSITE-1024x1024.png 1024w, https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2020\/03\/Copy-of-Pro-consensus-webinar-ANNOUNCEMENT-WEBSITE-150x150.png 150w, https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2020\/03\/Copy-of-Pro-consensus-webinar-ANNOUNCEMENT-WEBSITE-768x768.png 768w, https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2020\/03\/Copy-of-Pro-consensus-webinar-ANNOUNCEMENT-WEBSITE.png 1080w\" sizes=\"(max-width: 300px) 100vw, 300px\" \/><\/a> <a href=\"https:\/\/drive.google.com\/file\/d\/14QHrsNqbVXvwI6oUkqn1A6UFfO0oKEnt\/view?usp=drive_web\" target=\"_blank\" rel=\"https:\/\/drive.google.com\/file\/d\/14QHrsNqbVXvwI6oUkqn1A6UFfO0oKEnt\/view?usp=drive_web noopener noreferrer\"><img loading=\"lazy\" decoding=\"async\" class=\"alignleft wp-image-19580 size-medium\" src=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2020\/03\/Copy-of-Pro-consensus-webinar-ANNOUNCEMENT-WEBSITE-1-300x300.png\" alt=\"\" width=\"300\" height=\"300\" srcset=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2020\/03\/Copy-of-Pro-consensus-webinar-ANNOUNCEMENT-WEBSITE-1-300x300.png 300w, https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2020\/03\/Copy-of-Pro-consensus-webinar-ANNOUNCEMENT-WEBSITE-1-1024x1024.png 1024w, https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2020\/03\/Copy-of-Pro-consensus-webinar-ANNOUNCEMENT-WEBSITE-1-150x150.png 150w, https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2020\/03\/Copy-of-Pro-consensus-webinar-ANNOUNCEMENT-WEBSITE-1-768x768.png 768w, https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2020\/03\/Copy-of-Pro-consensus-webinar-ANNOUNCEMENT-WEBSITE-1.png 1080w\" sizes=\"(max-width: 300px) 100vw, 300px\" \/><\/a><\/span><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Qu&rsquo;est-ce qu&rsquo;un consensus ?&nbsp; Un consensus m\u00e9dical est un rapport sur un sujet sp\u00e9cifique, tel que Erdheim-Chester une maladie, par un groupe d&rsquo;experts m\u00e9dicaux qui ont une connaissance particuli\u00e8re de [&hellip;]<\/p>\n","protected":false},"author":14,"featured_media":62043,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"","_et_pb_old_content":"","_et_gb_content_width":"","_wds_title":"","_wds_metadesc":"","_wds_focus-keywords":"","_wds_meta-robots-adv":"","_wds_meta-robots-noindex":false,"_wds_meta-robots-nofollow":false,"_wds_meta-robots-index":false,"_wds_meta-robots-follow":false,"_wds_autolinks-exclude":false,"_wds_canonical":"","_wds_redirect":"","_wds_opengraph":[],"_wds_twitter":[],"cybocfi_hide_featured_image":"","wds_primary_category":0,"footnotes":"","_links_to":"","_links_to_target":""},"categories":[426,955,953],"tags":[1347,1346,898,893],"class_list":["post-62037","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-ecdga-actualites","category-recherche","category-vivre-avec-ecd","tag-collaboration-fr","tag-consensus-medical","tag-erdheim-chester-fr","tag-maladie-rare-fr"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/posts\/62037","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/users\/14"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/comments?post=62037"}],"version-history":[{"count":0,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/posts\/62037\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/media\/62043"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/media?parent=62037"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/categories?post=62037"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/tags?post=62037"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}