{"id":62110,"date":"2020-02-19T02:55:34","date_gmt":"2020-02-19T07:55:34","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/%e4%bb%80%e9%ba%bc%e6%98%af-ecd-%e6%82%a3%e8%80%85%e7%99%bb%e8%a8%98%e8%99%95%ef%bc%9f\/"},"modified":"2025-08-23T20:23:41","modified_gmt":"2025-08-24T00:23:41","slug":"%e4%bb%80%e9%ba%bc%e6%98%af-ecd-%e6%82%a3%e8%80%85%e7%99%bb%e8%a8%98%e8%99%95%ef%bc%9f","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/zh-hant\/%e4%bb%80%e9%ba%bc%e6%98%af-ecd-%e6%82%a3%e8%80%85%e7%99%bb%e8%a8%98%e8%99%95%ef%bc%9f\/","title":{"rendered":"\u4ec0\u9ebc\u662f ECD \u60a3\u8005\u767b\u8a18\u8655\uff1f"},"content":{"rendered":"<p><strong>\u60a8\u662f ECD \u60a3\u8005\u767b\u8a18\u8655\u7684\u6210\u54e1\u55ce\uff1f<\/strong><\/p>\n<p>\u60a8\u77e5\u9053\u53c3\u52a0\u9019\u6a23\u7684\u767b\u8a18\u975e\u5e38\u91cd\u8981\u55ce\uff1f<\/p>\n<p>\u4e86\u89e3\u8a66\u9a57\u3001\u8a3b\u518a\u6216\u7c21\u55ae\u5730\u63a5\u53d7\u7f55\u898b\u75c5\u6cbb\u7642\u7684\u5404\u500b\u65b9\u9762\u53ef\u80fd\u6703\u8b93\u4eba\u4e0d\u77e5\u6240\u63aa\u3002\u8b93\u6211\u5011\u5e6b\u52a9\u89e3\u91cb\u60a3\u8005\u767b\u8a18\u7684\u91cd\u8981\u6027\uff0c\u4ee5\u53ca\u70ba\u4ec0\u9ebc\u60a8\u61c9\u8a72\u8003\u616e\u6210\u70ba\u53c3\u8207\u8005\u3002 &nbsp;<\/p>\n<p><strong>\u4ec0\u9ebc\u662f\u60a3\u8005\u767b\u8a18\u8655\uff1f<\/strong><\/p>\n<p><span style=\"text-decoration: underline;\">\u5b9a\u7fa9<\/span>\uff1a\u4e00\u7a2e\u6709\u7d44\u7e54\u7684\u7cfb\u7d71\uff0c\u5b83\u4f7f\u7528\u89c0\u5bdf\u65b9\u6cd5\u6536\u96c6\u6578\u64da\u4e26\u8a55\u4f30\u7531\u7279\u5b9a\u75be\u75c5\u5b9a\u7fa9\u7684\u4eba\u7fa4\u7684\u7279\u5b9a\u7d50\u679c\u3002<\/p>\n<p>\u60a3\u8005\u767b\u8a18\u53ef\u4ee5\u6210\u70ba\u89c0\u5bdf\u75c5\u7a0b\u7684\u6709\u529b\u5de5\u5177;\u4e86\u89e3\u6cbb\u7642\u548c\u7d50\u5c40\u7684\u8b8a\u5316;\u6aa2\u67e5\u5f71\u97ff\u9810\u5f8c\u548c\u751f\u6d3b\u54c1\u8cea\u7684\u56e0\u7d20;\u63cf\u8ff0\u8b77\u7406\u6a21\u5f0f\uff0c\u5305\u62ec\u8b77\u7406\u7684\u9069\u7576\u6027\u548c\u63d0\u4f9b\u8b77\u7406\u7684\u5dee\u7570;\u8a55\u4f30\u6709\u6548\u6027;\u76e3\u6e2c\u5b89\u5168\u548c\u50b7\u5bb3;\u4ee5\u53ca\u8861\u91cf\u8b77\u7406\u54c1\u8cea\u3002\u901a\u904e\u6578\u64da\u53cd\u994b\u7b49\u529f\u80fd\uff0c\u8a3b\u518a\u8868\u4e5f\u88ab\u7528\u65bc\u7814\u7a76\u8cea\u91cf\u6539\u9032\u3002 <\/p>\n<p>\u7c21\u800c\u8a00\u4e4b\uff0c\u5b83\u662f\u7528\u65bc\u56de\u7b54\u672a\u77e5\u554f\u984c\u7684\u8cc7\u8a0a\u96c6\u5408\uff08\u4f86\u81ea\u60a3\u8005\u7684\u75c5\u53f2\uff09\uff0c\u4ee5\u53ca\u5c0d\u7279\u5b9a\u75be\u75c5\u7684\u9032\u4e00\u6b65\u7814\u7a76\u3002<\/p>\n<p><strong>\u70ba\u4ec0\u9ebc\u53c3\u8207\u5f88\u91cd\u8981\uff1f<\/strong><\/p>\n<p>\u9996\u5148\uff0c\u8b93\u60a3\u8005\u4e86\u89e3\u767b\u8a18\u88ab\u8a8d\u70ba\u662f\u300c\u6700\u5c0f\u98a8\u96aa\u300d\u5c24\u70ba\u91cd\u8981\uff0c\u56e0\u70ba\u5b83\u5011\u53ea\u662f\u5206\u4eab\u6709\u95dc\u4eba\u985e\u53d7\u8a66\u8005\u7684\u8cc7\u8a0a;\u4ed6\u5011\u5be6\u969b\u4e0a\u4e26\u6c92\u6709\u5c0d\u60a3\u8005\u9032\u884c\u6e2c\u8a66\u6216\u9032\u884c\u91ab\u7642\u7a0b\u5f0f\u3002<\/p>\n<p>\u591a\u5e74\u4f86\uff0c\u91ab\u7642\u4fdd\u5065\u63d0\u4f9b\u8005\u4e00\u76f4\u4ee5\u81e8\u5e8a\u8a66\u9a57\u70ba\u57fa\u790e\u5c0d\u60a3\u8005\u7684\u8b77\u7406\uff0c\u9019\u4e9b\u8a66\u9a57\u63d0\u4f9b\u4e86\u6709\u95dc\u53d7\u63a7\u689d\u4ef6\u4e0b\u6cbb\u7642\u6548\u679c\u7684\u6578\u64da\u3002\u96d6\u7136\u9019\u4e9b\u6578\u64da\u662f\u53ef\u9760\u548c\u5fc5\u8981\u7684\uff0c\u4f46\u5b83\u5011\u901a\u5e38\u4e0d\u9069\u7528\u65bc\u4e0d\u540c\u7684\u4eba\u7fa4\uff0c\u9019\u53ef\u80fd\u5c0e\u81f4\u8b49\u64da\u5dee\u8ddd\u3002\u8b49\u64da\u5dee\u8ddd\u6703\u963b\u7919\u60a3\u8005\u548c\u63d0\u4f9b\u8005\u505a\u51fa\u660e\u667a\u6c7a\u7b56\u7684\u80fd\u529b\u3002\u56e0\u6b64\uff0c\u70ba\u4e86\u6839\u64da\u771f\u5be6\u4e16\u754c\u7684\u7d50\u679c\u7167\u9867\u60a3\u8005\uff0c\u91ab\u7642\u4fdd\u5065\u5c08\u696d\u4eba\u54e1\u73fe\u5728\u5c08\u6ce8\u65bc\u5faa\u8b49\u91ab\u5b78\uff0c\u800c\u9019\u6b63\u662f\u60a3\u8005\u767b\u8a18\u6240\u63d0\u4f9b\u7684\u3002   <\/p>\n<p>\u91cd\u8981\u7684\u662f\u8981\u77ad\u89e3\uff0c\u60a3\u8005\u53ef\u4ee5\u514d\u8cbb\u53c3\u8207\u60a3\u8005\u767b\u8a18\u3002\u6c92\u6709\u65c5\u884c\u8981\u6c42\u3002\u901a\u5e38\uff0c\u4ed6\u5011\u53ea\u662f\u627f\u8afe\u6642\u9593\u540c\u610f\u7d0d\u5165\u548c\u91ab\u7642\u8a18\u9304\u3001\u8abf\u67e5\u548c\u5176\u4ed6\u53ef\u80fd\u7684\u8cc7\u8a0a\u3002  <\/p>\n<p>\u6709\u95dc\u7d00\u5ff5\u65af\u9686\u51f1\u7279\u7433\u764c\u75c7\u4e2d\u5fc3 ECD \u60a3\u8005\u767b\u8a18\u8655\u7684\u66f4\u591a\u8cc7\u8a0a\uff0c\u8acb\u8a2a\u554f\u6211\u5011\u7684\u7db2\u7ad9 <a href=\"https:\/\/www.erdheim-chester.org\/patient-registry\/\">ECD \u60a3\u8005\u767b\u8a18<\/a>\u8655\uff0c\u6216\u901a\u904e\u96fb\u8a71\u6216\u96fb\u5b50\u90f5\u4ef6\u806f\u7e6b\u7814\u7a76\u5718\u968a\u3002<\/p>\n<ul>\n<li>\u96fb\u8a71\uff1a \uff08212\uff09 610-0720<\/li>\n<li>\u96fb\u5b50\u90f5\u4ef6\uff1a <span class=\"reverse\">neuECDRegistry@mskcc.org<\/span><\/li>\n<\/ul>\n<p>\u6709\u95dc\u60a3\u8005\u767b\u8a18\u518a\u3001\u5b83\u5011\u70ba\u4f55\u91cd\u8981\u4ee5\u53ca\u5176\u4ed6\u6d3b\u52d5\u767b\u8a18\u518a\u793a\u4f8b\u7684\u66f4\u591a\u8cc7\u8a0a\uff0c\u8acb\u53c3\u95b1\uff1a <a href=\"https:\/\/www.ncbi.nlm.nih.gov\/books\/NBK208643\/\" target=\"_blank\" rel=\"noopener noreferrer\">https:\/\/www.ncbi.nlm.nih.gov\/books\/NBK208643\/<\/a>\u3002<\/p>\n<p>\u6709\u95dcErdheim-Chester\u75c5\u60a3\u8005\u7684\u5176\u4ed6\u7814\u7a76\u548c\u8a66\u9a57\u7684\u66f4\u591a\u8cc7\u8a0a\uff1a<a href=\"https:\/\/www.erdheim-chester.org\/DEVELOPMENT\/studies-trials\/\">\u7814\u7a76\u548c\u8a66\u9a57<\/a>\u3002<\/p>\n<p><span style=\"text-decoration: underline;\">\u8acb\u6ce8\u610f\uff0c\u52a0\u5165 ECD \u60a3\u8005\u767b\u8a18\u518a\uff0c\u60a8\u4e0d\u662f\u52a0\u5165 ECD \u5168\u7403\u806f\u76df\u7684\u6210\u54e1\u8cc7\u683c\uff01<\/span>\u5982\u679c\u60a8\u9084\u4e0d\u662f ECDGA\u7684\u6210\u54e1\uff0c\u4e5f\u8acb\u9ede\u64ca\u4e0b\u9762\u7684\u9023\u7d50\u52a0\u5165 ECDGA \u3002\u5982\u679c\u60a8\u5df2\u7d93\u662f\u6703\u54e1\uff0c\u8acb\u8003\u616e\u52a0\u5165 Registry \u8a3b\u518a\u3002\u8acb\u9ede\u64ca\u6211\u5011\u7684\u6703\u54e1\u9023\u7d50\u52a0\u5165 ECD \u5168\u7403\u806f\u76df\uff1a <a href=\"https:\/\/www.erdheim-chester.org\/DEVELOPMENT\/join\/\">\u52a0\u5165\u6211\u5011<\/a>\u3002  <\/p>\n","protected":false},"excerpt":{"rendered":"<p>\u60a8\u662f ECD \u60a3\u8005\u767b\u8a18\u8655\u7684\u6210\u54e1\u55ce\uff1f \u60a8\u77e5\u9053\u53c3\u52a0\u9019\u6a23\u7684\u767b\u8a18\u975e\u5e38 [&hellip;]<\/p>\n","protected":false},"author":14,"featured_media":62111,"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":[422],"tags":[959,961,1423,958,960,954,1013,952,956,1012,962],"class_list":["post-62110","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-ecdga-","tag-959","tag-961","tag-1423","tag-958","tag-960","tag-954","tag-1013","tag--zh-hant","tag-956","tag-1012","tag-962"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/zh-hant\/wp-json\/wp\/v2\/posts\/62110","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/zh-hant\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/zh-hant\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh-hant\/wp-json\/wp\/v2\/users\/14"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh-hant\/wp-json\/wp\/v2\/comments?post=62110"}],"version-history":[{"count":0,"href":"https:\/\/www.erdheim-chester.org\/zh-hant\/wp-json\/wp\/v2\/posts\/62110\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh-hant\/wp-json\/wp\/v2\/media\/62111"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/zh-hant\/wp-json\/wp\/v2\/media?parent=62110"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh-hant\/wp-json\/wp\/v2\/categories?post=62110"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh-hant\/wp-json\/wp\/v2\/tags?post=62110"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}