{"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":"%e5%85%b1%e8%af%86%e6%96%87%e4%bb%b6%ef%bc%9a%e6%82%a3%e8%80%85%e8%8e%b7%e7%9b%8a","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/zh\/consensus-document-patient-use-benefits\/","title":{"rendered":"\u5171\u8bc6\u6587\u4ef6\uff1a\u60a3\u8005\u4f7f\u7528\u4e0e\u83b7\u76ca"},"content":{"rendered":"

\u4ec0\u4e48\u662f\u5171\u8bc6\uff1f<\/span><\/b> <\/span><\/p>\n

\u533b\u5b66\u5171\u8bc6\u662f\u6307\u7531\u4e00\u7fa4\u5bf9\u7279\u5b9a\u75be\u75c5\uff08\u4f8b\u5982\u57c3\u5c14\u5fb7\u6d77\u59c6-\u5207\u65af\u7279\u75c5\uff09\u5177\u6709\u4e13\u4e1a\u77e5\u8bc6\u7684\u533b\u5b66\u4e13\u5bb6\u5c31\u8be5\u4e3b\u9898\u6240\u64b0\u5199\u7684\u62a5\u544a\u3002\u8be5\u4e13\u5bb6\u7ec4\u5c31\u5faa\u8bc1\u533b\u5b66\u548c\u6700\u524d\u6cbf\uff08\u6700\u5148\u8fdb\u7684\u79d1\u5b66\uff09\u77e5\u8bc6\u8fbe\u6210\u4e00\u81f4\u3002 \u5176\u4e3b\u8981\u76ee\u7684\u662f\u5c31\u8bca\u65ad\u548c\u6cbb\u7597\u67d0\u4e9b\u75be\u75c5\u7684\u6700\u4f73\u4e14\u53ef\u63a5\u53d7\u7684\u65b9\u6cd5\uff0c\u6216\u5982\u4f55\u5904\u7406\u7279\u5b9a\u7684\u51b3\u7b56\u9886\u57df\uff0c\u5411\u533b\u751f\u63d0\u4f9b\u6307\u5bfc\u3002\u5b83\u901a\u5e38\u662f\u57fa\u4e8e\u533b\u5b66\u754c\u5171\u8bc6\u7684\u51b3\u7b56\u548c\u51fa\u7248\u6d41\u7a0b\u7684\u4f53\u73b0\u3002.<\/span> <\/span><\/p>\n

\u4e3a\u4f55\u533b\u7597\u5171\u8bc6\u5982\u6b64\u91cd\u8981\uff1f\u8fd9\u5bf9\u57c3\u5c14\u5fb7\u6d77\u59c6-\u5207\u65af\u7279\u75c5\u60a3\u8005\u610f\u5473\u7740\u4ec0\u4e48\uff1f<\/span><\/b> <\/span><\/p>\n

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><\/p>\n

\u5728\u4e16\u754c\u5404\u5730\u9886\u5148\u7684ECD\u533b\u5b66\u4e13\u5bb6\u7684\u5171\u540c\u52aa\u529b\u4e0b\uff0c\u4e00\u4efd\u65b0\u7684ECD\u5171\u8bc6\u62a5\u544a\u5df2\u5236\u5b9a\u5b8c\u6210\uff0c\u65e8\u5728\u7f13\u89e3\u4e34\u5e8a\u533b\u751f\u5728\u6cbb\u7597\u8fc7\u7a0b\u4e2d\u9762\u4e34\u7684\u4e00\u4e9b\u590d\u6742\u95ee\u9898\u3002.<\/span> <\/span><\/p>\n

\u8fd9\u5bf9ECD\u60a3\u8005\u610f\u5473\u7740\u4ec0\u4e48\uff1f<\/span><\/b> <\/span><\/p>\n

The goal of the consensus is to aid in improving diagnosis, treatment, and overall quality of life for Erdheim-Chester Disease patients by serving as guidelines for medical professionals treating patients.<\/span> <\/span><\/p>\n

\u4f5c\u4e3a\u60a3\u8005\u6216\u5bb6\u5c5e\uff0c\u60a8\u53ef\u4ee5\u5c06\u8be5\u5171\u8bc6\u6587\u4ef6\u7684\u94fe\u63a5\u5206\u4eab\u7ed9\u60a8\u7684\u533b\u7597\u56e2\u961f\u3002\u8bf7\u5c31\u60a8\u5f53\u524d\u7684\u6cbb\u7597\u65b9\u6848\u53ca\u5176\u4e0e\u65b0\u5171\u8bc6\u6587\u4ef6\u7684\u5951\u5408\u5ea6\uff0c\u8868\u8fbe\u60a8\u7684\u60f3\u6cd5\u5e76\u63d0\u51fa\u4efb\u4f55\u7591\u95ee\u3002.<\/span> <\/span><\/p>\n

\u6700\u65b0\u53d1\u5e03\u7684\u5171\u8bc6\u6307\u5357\u53ef\u70b9\u51fb\u6b64\u5904\u67e5\u770b\u3002.<\/a><\/strong><\/p>\n

\u5982\u679c\u60a8\u5bf9\u6700\u65b0\u7684\u5171\u8bc6\u6587\u4ef6\u8fd8\u6709\u5176\u4ed6\u7591\u95ee\u6216\u987e\u8651\uff0c\u8bf7\u8054\u7cfb\u60a8\u7684 ECD \u62a4\u7406\u4e2d\u5fc3\u533b\u751f\u6216 ECD \u5168\u7403\u8054\u76df\u56e2\u961f\u3002.<\/span> \u6211\u4eec\u5e0c\u671b\u60a8\u80fd\u5c06\u6b64\u4fe1\u606f\u544a\u77e5\u60a8\u7684\u533b\u7597\u56e2\u961f\u3002.  <\/strong><\/span><\/p>\n

 <\/h3>\n

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\"\"<\/a> \"\"<\/a><\/span><\/p>","protected":false},"excerpt":{"rendered":"

What is a consensus?  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 […]<\/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\/zh\/wp-json\/wp\/v2\/posts\/9408","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/users\/14"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/comments?post=9408"}],"version-history":[{"count":0,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/posts\/9408\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/media\/9361"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/media?parent=9408"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/categories?post=9408"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/tags?post=9408"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}