{"id":9408,"date":"2020-03-31T15:22:44","date_gmt":"2020-03-31T15:22:44","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/?p=9408"},"modified":"2025-08-23T17:13:41","modified_gmt":"2025-08-23T21:13:41","slug":"konsensusdokument-om-fordelene-ved-pasientbruk","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/nb\/consensus-document-patient-use-benefits\/","title":{"rendered":"Konsensusdokument: Pasientbruk og fordeler"},"content":{"rendered":"<p aria-level=\"4\"><b><span data-contrast=\"auto\">Hva er en konsensus?<\/span><\/b><span data-ccp-props=\"{&quot;134233117&quot;:true,&quot;134233118&quot;:true,&quot;201341983&quot;:0,&quot;335559740&quot;:240}\">&nbsp;<\/span><\/p>\n<p><span data-contrast=\"auto\">En medisinsk konsensus er en rapport om et bestemt tema, for eksempel Erdheim-Chester-syndromet, utarbeidet av en gruppe medisinske eksperter som har spesiell kunnskap om sykdommen. Denne ekspertgruppen er enig om evidensbasert kunnskap og den nyeste vitenskapelige innsikten. Hovedform\u00e5let er \u00e5 gi leger r\u00e5d om den best mulige og akseptable m\u00e5ten \u00e5 diagnostisere og behandle visse sykdommer p\u00e5, eller hvordan man skal h\u00e5ndtere et bestemt beslutningsomr\u00e5de. Det er vanligvis et fagmilj\u00f8basert uttrykk for en konsensusbasert beslutnings- og publiseringsprosess.<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:259}\">&nbsp;<\/span><\/p>\n<p aria-level=\"4\"><b><span data-contrast=\"auto\">Hvorfor er det viktig med enighet innen helsevesenet, og hva betyr dette for pasienter med Erdheim-Chester-syndrom?<\/span><\/b><span data-ccp-props=\"{&quot;134233117&quot;:true,&quot;134233118&quot;:true,&quot;201341983&quot;:0,&quot;335559740&quot;:240}\">&nbsp;<\/span><\/p>\n<p><span data-contrast=\"auto\">Erdheim-Chester Disease (ECD) is so rare that diagnosis can take months or even years. Once a diagnosis has been made, the process of treatment begins, which can also be quite extensive process.<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:259}\">&nbsp;<\/span><\/p>\n<p><span data-contrast=\"auto\">Takket v\u00e6re den felles innsatsen fra ledende medisinske eksperter innen ECD fra hele verden er det utarbeidet en ny konsensusrapport om ECD for \u00e5 forenkle noen av de utfordringene som behandlende leger st\u00e5r overfor.<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:259}\">&nbsp;<\/span><\/p>\n<p aria-level=\"4\"><b><span data-contrast=\"auto\">Hva betyr dette for pasienter med ECD?<\/span><\/b><span data-ccp-props=\"{&quot;134233117&quot;:true,&quot;134233118&quot;:true,&quot;201341983&quot;:0,&quot;335559740&quot;:240}\">&nbsp;<\/span><\/p>\n<p><span data-contrast=\"auto\">The goal of the consensus is to aid in improving diagnosis, treatment, and overall quality of life for&nbsp;Erdheim-Chester Disease patients by serving&nbsp;as guidelines for medical professionals treating patients.<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:259}\">&nbsp;<\/span><\/p>\n<p><span data-contrast=\"auto\">Som pasient eller p\u00e5r\u00f8rende kan du dele lenken til konsensusdokumentet med behandlingsteamene dine. Gi uttrykk for dine tanker og eventuelle sp\u00f8rsm\u00e5l om din n\u00e5v\u00e6rende behandling, og hvordan den samsvarer med det nye konsensusdokumentet.<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;: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\">De nyeste konsensusretningslinjene finner du HER.<\/a><\/strong><\/p>\n<p><span data-contrast=\"auto\">Hvis du har flere sp\u00f8rsm\u00e5l eller bekymringer ang\u00e5ende det nyeste konsensusdokumentet, kan du ta kontakt med legen din ved ECD Care Center eller teamet i ECD Global Alliance.<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:259}\"> <strong>Vi h\u00e5per du vil dele denne informasjonen med behandlerteamet ditt.&nbsp;&nbsp;<\/strong><\/span><\/p>\n<h3>&nbsp;<\/h3>\n<h3><strong>For mer informasjon, se disse opptakene fra webinarene:<\/strong><\/h3>\n<p><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;: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>","protected":false},"excerpt":{"rendered":"<p>What is a consensus?&nbsp; A medical consensus is a report on a specific subject, such as Erdheim-Chester Disease, from a group of medical experts that have a particular knowledge of [&hellip;]<\/p>\n","protected":false},"author":14,"featured_media":9361,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"","_et_pb_old_content":"","_et_gb_content_width":"","cybocfi_hide_featured_image":"","wds_primary_category":0,"footnotes":"","_links_to":"","_links_to_target":""},"categories":[67,51,70],"tags":[86,56,85,52],"class_list":["post-9408","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-community-support","category-news","category-research-awareness","tag-collaboration","tag-erdheim-chester","tag-medical-consensus","tag-rare-disease"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/posts\/9408","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/users\/14"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/comments?post=9408"}],"version-history":[{"count":0,"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/posts\/9408\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/media\/9361"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/media?parent=9408"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/categories?post=9408"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/tags?post=9408"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}