{"id":63619,"date":"2021-10-12T09:00:35","date_gmt":"2021-10-12T13:00:35","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/%e5%9c%a8%e6%82%a8%e7%9a%84%e5%b9%ab%e5%8a%a9%e4%b8%8b%e5%8a%a0%e5%bc%b7-ecd-%e7%a0%94%e7%a9%b6\/"},"modified":"2025-08-23T17:28:32","modified_gmt":"2025-08-23T21:28:32","slug":"%e5%9c%a8%e6%82%a8%e7%9a%84%e5%b9%ab%e5%8a%a9%e4%b8%8b%e5%8a%a0%e5%bc%b7-ecd-%e7%a0%94%e7%a9%b6","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/zh-hant\/%e5%9c%a8%e6%82%a8%e7%9a%84%e5%b9%ab%e5%8a%a9%e4%b8%8b%e5%8a%a0%e5%bc%b7-ecd-%e7%a0%94%e7%a9%b6\/","title":{"rendered":"\u5728\u60a8\u7684\u5e6b\u52a9\u4e0b\u52a0\u5f37 ECD \u7814\u7a76"},"content":{"rendered":"<h2>\u60a8\u53ef\u4ee5\u5728\u5c0d\u6297 ECD \u65b9\u9762\u767c\u63ee\u91cd\u8981\u4f5c\u7528\u3002<\/h2>\n<p><em><strong><a href=\"http:\/\/https:\/\/ecdgaresearchpriorities.questionpro.com\/?eType=EmailBlastContent&amp;eId=ce7f8789-4746-40e7-8a4b-056bcf6a321c\"><img loading=\"lazy\" decoding=\"async\" class=\"alignright wp-image-19810\" style=\"width: 279px; max-width: 640px;\" src=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2021\/10\/blog-image-within-doc-300x300.png\" alt=\"\" width=\"300\" height=\"279\"><\/a>\u5982\u679c\u60a8\u662f\u60a3\u8005\u6216\u76f4\u63a5\u8b77\u7406\u4eba\u54e1\uff0c\u8acb\u5728 2021 \u5e74 10 \u6708 30 \u65e5\u4e4b\u524d\u53c3\u52a0\u6b64\u8abf\u67e5\u3002<\/strong><\/em><\/p>\n<p><a class=\"cont-btn\" href=\"https:\/\/ecdgaresearchpriorities.questionpro.com\/\" target=\"_blank\" rel=\"noopener noreferrer\">\u53c3\u52a0\u8abf\u67e5<\/a><\/p>\n<p>\u7576 ECD \u5168\u7403\u806f\u76df \uff08ECDGA\uff09 \u6210\u7acb\u6642\uff0c\u9700\u8981\u7814\u7a76\u4f86\u8aac\u660e\u6539\u5584 Erdheim-Chester \u75c5 \uff08ECD \u7684\u8a3a\u65b7\u548c\u6cbb\u7642\u3002\u4eba\u5011\u5c0d\u9019\u7a2e\u75be\u75c5\u77e5\u4e4b\u751a\u5c11\uff0c\u800c\u4e14\u7814\u7a76\u5f88\u56f0\u96e3\uff0c\u56e0\u70ba\u60a3\u8005\u53ef\u53ca\u6027\u6709\u9650\uff0c\u800c\u4e14\u5e7e\u4e4e\u4e0d\u5b58\u5728\u8cc7\u91d1\u3002\u5728 ECDGA \u6210\u7acb\u50c5\u4e00\u5e74\u591a\u540e\uff0c\u8a72\u7d44\u7e54\u5c31\u958b\u59cb\u8cc7\u52a9\u4ee5 ECD \u70ba\u91cd\u9ede\u7684\u7814\u7a76\u3002  <\/p>\n<p>ECDGA \u6b77\u4f86\u8cc7\u52a9\u4e86\u91ab\u5b78\u754c\u63d0\u51fa\u7684\u4e5d \uff089\uff09 \u500b\u7814\u7a76\u5c08\u6848\uff0c\u50f9\u503c\u8d85\u904e 700,000 \u7f8e\u5143\u3002\u9019\u5728\u63a8\u52d5 ECD \u7814\u7a76\u65b9\u9762\u767c\u63ee\u4e86\u5f88\u597d\u7684\u4f5c\u7528\u3002\u5728\u904e\u53bb\u5341\u5e74\u4e2d\uff0c\u4eba\u5011\u5c0d ECD \u77ad\u89e3\u4e86\u5f88\u591a\uff0c\u4e26\u4e14\u5728 ECD \u6cbb\u7642\u65b9\u9762\u53d6\u5f97\u4e86\u91cd\u5927\u7a81\u7834\uff0c\u5305\u62ec FDA \u6279\u51c6\u7684\u6cbb\u7642\u65b9\u6cd5\u3002\u96d6\u7136\u6c92\u6709\u5f97\u5230 FDA \u7684\u6279\u51c6\uff0c\u4f46\u4e5f\u767c\u73fe\u4e86\u5176\u4ed6\u9776\u5411\u6cbb\u7642\u65b9\u6cd5\u3002\u901a\u904e\u66f4\u597d\u7684\u6cbb\u7642\uff0c\u60a3\u8005\u73fe\u5728\u904e\u4e0a\u4e86\u66f4\u6b63\u5e38\u7684\u751f\u6d3b\u3002    <\/p>\n<p>\u8fc4\u4eca\u70ba\u6b62\uff0c\u6240\u9032\u884c\u7684\u7814\u7a76\u96c6\u4e2d\u5728 \uff081\uff09 \u57fa\u790e\u79d1\u5b78\uff0c\uff082\uff09 \u904e\u6e21\u7814\u7a76\u548c \uff083\uff09 \u81e8\u5e8a\u7814\u7a76\u3002<\/p>\n<p style=\"padding-left: 40px;\">1\uff09 <span style=\"text-decoration: underline;\">\u57fa\u790e\u79d1\u5b78\u7814\u7a76<\/span> \u5141\u8a31\u79d1\u5b78\u5bb6\u9032\u884c\u5be6\u9a57\u5ba4\u8abf\u67e5\uff0c\u4ee5\u589e\u52a0\u5c0d ECD \u7684\u77e5\u8b58\u548c\u7406\u89e3\u3002\u9019\u9805\u7531 ECD\u8cc7\u52a9\u7684\u7814\u7a76\u65e8\u5728\u66f4\u597d\u5730\u77ad\u89e3 ECD \u60a3\u8005\u8eab\u4e0a\u770b\u5230\u7684\u5404\u7a2e\u7a81\u8b8a\uff0c\u90e8\u5206\u4f5c\u70ba\u57fa\u790e\u79d1\u5b78\u7814\u7a76\u5c08\u6848\u7372\u5f97\u8cc7\u52a9\u3002\u9019\u4e9b\u767c\u73fe\u6700\u7d42\u70ba\u8a31\u591a\u7d44\u7e54\u7d30\u80de\u60a3\u8005\u767c\u73fe\u4e86\u66f4\u6709\u91dd\u5c0d\u6027\u7684\u6cbb\u7642\u65b9\u6cd5\u3002  <\/p>\n<p style=\"padding-left: 40px;\">2\uff09 <span style=\"text-decoration: underline;\">\u8f49\u5316\u7814\u7a76<\/span> \u5229\u7528\u5728\u57fa\u790e\u7814\u7a76\u4e2d\u5b78\u5230\u7684\u77e5\u8b58\u4f86\u78ba\u5b9a\u5982\u4f55\u5c07\u9019\u4e9b\u77e5\u8b58\u300c\u8f49\u5316\u300d\u5230\u81e8\u5e8a\u8b77\u7406\u4e2d\u3002\u4f8b\u5982\uff0c\u7576\u767c\u73fe\u4e0d\u540c\u7684 ECD \u7a81\u8b8a\u6642\uff0c\u8f49\u5316\u7814\u7a76\u5c08\u6848\u80fd\u5920\u767c\u73fe\u53ef\u7528\u65bc\u9776\u5411\u9019\u4e9b\u7a81\u8b8a\u7684\u53ef\u80fd\u6cbb\u7642\u65b9\u6cd5\u3002 <\/p>\n<p style=\"padding-left: 40px;\">3\uff09 <span style=\"text-decoration: underline;\">\u81e8\u5e8a\u7814\u7a76<\/span> \u8457\u773c\u65bc\u589e\u52a0\u5c0d\u8a3a\u65b7\u3001\u6cbb\u7642\u548c\u8b77\u7406\u7ba1\u7406\u65b9\u9762\u6700\u9069\u5408\u60a3\u8005\u7684\u7406\u89e3\u3002\u8a3a\u65b7\u7814\u7a76\u5c0d\u65bc\u8aac\u660e\u60a3\u8005\u5728\u75be\u75c5\u9032\u5c55\u65e9\u671f\u505a\u51fa\u8a3a\u65b7\u975e\u5e38\u91cd\u8981\uff0c\u6b64\u6642\u5668\u5b98\u53ef\u80fd\u767c\u751f\u7684\u4e0d\u53ef\u9006\u640d\u50b7\u8f03\u5c11\u3002\u6cbb\u7642\u548c\u8b77\u7406\u7ba1\u7406\u7814\u7a76\u53ef\u4ee5\u52a0\u6df1\u5c0d\u54ea\u4e9b\u6cbb\u7642\u548c\u8b77\u7406\u80fd\u70ba\u60a3\u8005\u5e36\u4f86\u6700\u4f73\u7d50\u679c\u7684\u7406\u89e3\u3002  <\/p>\n<p>\u8fc4\u4eca\u70ba\u6b62\u9032\u884c\u7684\u4e00\u4e9b ECD \u81e8\u5e8a\u7814\u7a76\u4e0d\u50c5\u5074\u91cd\u65bc\u66f4\u597d\u7684\u8a3a\u65b7\u548c\u6cbb\u7642\u65b9\u6848\uff0c\u9084\u5074\u91cd\u65bc\u66f4\u597d\u5730\u77ad\u89e3 ECD \u5982\u4f55\u5f71\u97ff\u4e0d\u540c\u7684\u5668\u5b98\uff0c\u5c24\u5176\u662f\u5927\u8166\u548c\u795e\u7d93\u7cfb\u7d71\u3002<\/p>\n<p>ECDGA \u9084\u90e8\u5206\u8cc7\u52a9\u4e86 <a title=\"\u60a3\u8005\u767b\u8a18\u8655\" href=\"https:\/\/www.erdheim-chester.org\/patient-registry\/\">ECD \u60a3\u8005\u767b\u8a18\u8655<\/a>\uff0c\u9019\u662f\u4e00\u500b\u4ee5\u6709\u7d44\u7e54\u7684\u5f62\u5f0f\u6536\u96c6\u60a3\u8005\u75c5\u53f2\u7684\u8cc7\u6599\u5eab\u3002\u9019\u5141\u8a31\u4ee5\u66f4\u5168\u9762\u7684\u65b9\u5f0f\u4e00\u8d77\u5206\u6790\u5728\u8a31\u591a\u4e0d\u540c\u6a5f\u69cb\u5c31\u8a3a\u7684\u60a3\u8005\u7684\u8cc7\u8a0a\u3002\u901a\u904e\u5206\u6790 ECD \u4eba\u7fa4\uff0c\u79d1\u5b78\u5bb6\u53ef\u4ee5\u958b\u59cb\u770b\u5230\u6709\u52a9\u65bc\u77ad\u89e3 ECD \u7684\u6a21\u5f0f\u548c\u7dda\u7d22\uff0c\u4e26\u6709\u671b\u5728\u7279\u5b9a\u60c5\u6cc1\u4e0b\u627e\u5230\u6700\u6709\u6548\u7684\u6cbb\u7642\u65b9\u6cd5\u3002  &nbsp; ECDGA \u9084\u8207\u7f8e\u570b\u570b\u7acb\u885b\u751f\u7814\u7a76\u9662\u5408\u4f5c\uff0c\u5c0dECD\u9032\u884c\u81ea\u7136\u6b77\u53f2\u7814\u7a76\u3002\u6536\u96c6\u7684\u6578\u64da\u5c07\u7e7c\u7e8c\u7528\u65bc\u9032\u4e00\u6b65\u7814\u7a76\u3002 <\/p>\n<p><strong>\u70ba\u4e86\u78ba\u4fdd ECD \u77e5\u8b58\u7684\u9032\u4e00\u6b65\u767c\u5c55\u8207\u8207\u60a3\u8005\u53ca\u5176\u5bb6\u4eba\u6700\u76f8\u95dc\u7684\u554f\u984c\u4fdd\u6301\u4e00\u81f4\uff0c ECDGA \u8463\u4e8b\u6703\u73fe\u5728\u6b63\u5728\u8003\u616e\u6839\u64da\u60a3\u8005\/\u8b77\u7406\u4eba\u54e1\u7684\u512a\u5148\u4e8b\u9805\u8cc7\u52a9\u7814\u7a76\u5c08\u6848\uff0c\u4ee5\u53ca\u91ab\u5b78\u754c\u9700\u6c42\u63d0\u51fa\u7684\u7814\u7a76\u3002<\/strong><\/p>\n<p>\u70ba\u4e86\u77ad\u89e3\u60a3\u8005\u53ca\u5176\u89aa\u4eba\u7684\u512a\u5148\u4e8b\u9805\u548c\u9700\u6c42\uff0c\u5df2\u7d93\u5236\u5b9a\u4e86\u4e00\u9805\u8abf\u67e5\u4f86\u6536\u96c6\u793e\u5340\u7684\u610f\u898b\u3002\u6211\u5011\u9080\u8acb\u6240\u6709 ECD \u60a3\u8005\u53ca\u5176\u5bb6\u5ead\u6210\u54e1\u5728 <strong>2021 \u5e74 10 \u6708 30 \u65e5\u4e4b\u524d<\/strong>\u5b8c\u6210\u4e26\u63d0\u4ea4\u6b64\u8abf\u67e5\u3002 <\/p>\n<p>\u5f9e\u8abf\u67e5\u4e2d\u6536\u96c6\u7684\u8cc7\u8a0a\u5c07\u8207 ECD \u91ab\u5b78\u754c\u9032\u884c\u5206\u6790\u548c\u8a0e\u8ad6\uff0c\u4ee5\u5f97\u51fa\u53ef\u80fd\u7684\u7814\u7a76\u5c08\u6848\uff0c\u9019\u4e9b\u5c08\u6848\u53ef\u80fd\u6703\u5e36\u4f86\u5c0d\u793e\u5340\u6700\u6709\u610f\u7fa9\u7684\u77e5\u8b58\u3002<\/p>\n<p>\u5982\u679c\u60a8\u5c1a\u672a\u5b8c\u6210\u8abf\u67e5\uff0c\u8acb\u9078\u64c7\u4e0b\u9762\u7684\u6309\u9215\uff0c\u4ee5\u5b8c\u6210\u8abf\u67e5\u3002<\/p>\n<p><a class=\"cont-btn\" href=\"https:\/\/ecdgaresearchpriorities.questionpro.com\/\" target=\"_blank\" rel=\"noopener noreferrer\">\u53c3\u52a0\u8abf\u67e5<\/a><\/p>\n<p>\u77ad\u89e3\u66f4\u591a\u8cc7\u8a0a\uff1a<\/p>\n<p><a href=\"https:\/\/www.erdheim-chester.org\/zh-hant\/%e7%a0%94%e7%a9%b6%e8%88%87%e8%a9%a6%e9%a9%97\/\">\u7576\u524d\u7814\u7a76\u548c\u8a66\u9a57<\/a><br \/>\n<a title=\"\u8cc7\u91d1\u8207\u7814\u7a76\" href=\"https:\/\/www.erdheim-chester.org\/funding-research\/\">ECD \u8d08\u6b3e\u8cc7\u52a9<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>\u60a8\u53ef\u4ee5\u5728\u5c0d\u6297 ECD \u65b9\u9762\u767c\u63ee\u91cd\u8981\u4f5c\u7528\u3002 \u5982\u679c\u60a8\u662f\u60a3\u8005\u6216\u76f4\u63a5 [&hellip;]<\/p>\n","protected":false},"author":14,"featured_media":63621,"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":[422,891],"tags":[1531,959,961,1736,958,960,954,1498,952,956,1734,962],"class_list":["post-63619","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-ecdga-","category-891","tag-histio-zh-hant","tag-959","tag-961","tag-1736","tag-958","tag-960","tag-954","tag--zh-hant","tag-956","tag-1734","tag-962"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/zh-hant\/wp-json\/wp\/v2\/posts\/63619","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=63619"}],"version-history":[{"count":0,"href":"https:\/\/www.erdheim-chester.org\/zh-hant\/wp-json\/wp\/v2\/posts\/63619\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh-hant\/wp-json\/wp\/v2\/media\/63621"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/zh-hant\/wp-json\/wp\/v2\/media?parent=63619"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh-hant\/wp-json\/wp\/v2\/categories?post=63619"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh-hant\/wp-json\/wp\/v2\/tags?post=63619"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}