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class=\"wp-block-heading\">\uff31\uff1a\u6211\u7684\u5b69\u5b50\u5e7e\u6b72\u6642\u6211\u624d\u80fd\u77e5\u9053\u4ed6\u9700\u8981\u900f\u6790\u6cbb\u7642\u6216\u814e\u81df\u79fb\u690d\uff1f<\/h3>\n\n\n\n<p>\u5c0d\u65bc\u90a3\u4e9b\u5728\u65b0\u751f\u6642\u671f\u5b58\u6d3b\u4e0b\u4f86\u7684 ARPKD \u5b69\u5b50\uff0c \u53ea\u8981\u4ed6\u5011\u9762\u81e8\u814e\u8870\u7aed\u7684\u6642\u5019\u90fd\u80fd\u9032\u884c\u900f\u6790\u6cbb\u7642\u6216\u63db\u814e\u3002 \u6700\u4f73\u6cbb\u7642\u65b9\u6cd5\u7684\u9078\u64c7\u4e0d\u55ae\u6307\u5b69\u5b50\u7684\u5e74\u9f61\uff0c \u5176\u4ed6\u5065\u5eb7\u554f\u984c\u8207\u9644\u8fd1\u6709\u6c92\u6709\u91ab\u9662\u53ef\u4ee5\u7167\u9867\u9019\u500b\u75c5\u60a3\u5152\u7ae5\u800c\u5b9a\u3002 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\u814e\u81df\u79fb\u690d\u901a\u5e38\u4f86\u8aaa\u662f\u4e00\u500b\u6bd4\u900f\u6790\u66f4\u597d\u7684\u9577\u671f\u6cbb\u7642\u65b9\u5f0f\u3002 \u66f4\u597d\u7684\u662f\uff0c\u63d0\u4f9b\u900f\u6790\u76f4\u5230\u5b69\u5b50\u751f\u9577\u5230\u5920\u5927\u6642\u518d\u79fb\u690d\u814e\u81df\uff0c\u9019\u6703\u589e\u52a0\u79fb\u690d\u6210\u529f\u7684\u6a5f\u7387\u3002<\/p>\n\n\n\n<h3 class=\"wp-block-heading\">\uff31\uff1a\u5728\u54ea\u88e1\u53ef\u4ee5\u5f97\u5230\u5931\u53bb\u89aa\u5b50\u4e4b\u75db\u7684\u652f\u6301\uff1f<\/h3>\n\n\n\n<p>\u4e00\u4e9b\u5730\u5340\u91ab\u9662\u6709\u5931\u89aa\u652f\u6301\u5718\u9ad4\u3002ARPKD \u7d44\u7e54\u4e5f\u6703\u5617\u8a66\u806f\u7e6b\u5931\u53bb\u4e86 ARPKD \u5b30\u5152\/\u5152\u7ae5\u7684\u5bb6\u5ead\u3002\u4e5f\u6709\u5728Facebook\u4e0a\u7684 <a href=\"https:\/\/www.facebook.com\/groups\/arpkdangels\/\" data-type=\"link\" data-id=\"https:\/\/www.facebook.com\/groups\/arpkdangels\/\" target=\"_blank\" rel=\"noreferrer noopener\">ARPKD \u5931\u89aa\u652f\u6301\u5718\u9ad4<\/a>\uff0c\u3002<\/p>\n\n\n\n<h3 class=\"wp-block-heading\">\uff31\uff1a\u6211\u7684\u5b69\u5b50\u9700\u8981\u500b\u5225\u5f0f\u6559\u80b2\u8a08\u756b\u55ce\uff1f<\/h3>\n\n\n\n<p>\u4e26\u975e\u6240\u6709\u7684\u5c0f\u5b69\u9700\u8981\u500b\u5225\u5f0f\u6559\u80b2\u8a08\u756b\uff0c \u4f46\u5373\u4f7f\u5c0d\u65bc\u4e00\u4e9b\u7121\u9700\u900f\u6790\u7684\u5b69\u7ae5\uff0c \u7236\u6bcd\u89aa\u9078\u64c7\u8b93\u5b78\u6821\u77e5\u9053\u6709\u95dc ARPKD \u5b69\u7ae5\u7684\u76f8\u95dc\u554f\u984c\uff0c\u7279\u5225\u662f\u6709\u95dc\u7528\u6c34\u885b\u751f\u65b9\u9762\uff0c \u6574\u65e5\u4f7f\u7528\u885b\u5ec1\u65b9\u9762\u8207\u8b93\u6821\u65b9\u885b\u751f\u8b77\u7406\u4eba\u54e1\u77e5\u9053\u5982\u4f55\u8fa8\u8b58\u9019\u7a2e\u5b69\u7ae5\u662f\u5426\u7dca\u6025\u72c0\u6cc1\u7684\u5fb5\u5146\u3002<br>\u5982\u679c\u4f60\u7684\u5b69\u5b50\u51fa\u751f\u6642\u6709\u5f85\u904e\u65b0\u751f\u5152\u52a0\u8b77\u75c5\u623f( NICU )\uff0c 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class=\"wp-block-heading\">\uff31\uff1a\u6709\u4efb\u4f55\u652f\u6301\u5718\u9ad4\u7d66\u4e88\u8ca1\u52d9\u652f\u63f4\u6216\u5e6b\u5fd9\u652f\u4ed8\u91ab\u85e5\u8cbb\u55ce\uff1f<\/h3>\n\n\n\n<p>\u9664\u4e86\u91ab\u7642\u88dc\u52a9\u548c\u91ab\u7642\u4fdd\u96aa\u5916\uff0c\u5982\u679c\u4f60\u88ab\u8a55\u4f30\u53ef\u4ee5(\u6240\u6709\u5728\u900f\u6790\u8207\u79fb\u690d\u7684\u75c5\u7ae5\u7686\u53ef\u7372\u5f97\u570b\u5bb6\u7684\u91ab\u7642\u88dc\u52a9)\uff0c \u662f\u6709\u4e00\u4e9b\u53ef\u4ee5\u63d0\u4f9b\u4e00\u4e9b\u5354\u52a9\uff0c \u91ab\u9662\u88e1\u901a\u5e38\u90fd\u6709\u4e00\u4e9b\u91dd\u5c0d\u809d\uff0c\u814e\u91ab\u7642\u65b9\u9762\u7684\u793e\u5de5\u7d44\u7e54\u80fd\u5e6b\u5fd9\u627e\u5c0b\u9069\u7576\u7684\u8cc7\u6e90\u8207\u5354\u52a9\u6587\u66f8\u7533\u8acb\u4f5c\u696d\u3002<\/p>\n\n\n\n<h3 class=\"wp-block-heading\">\uff31\uff1a\u6211\u5011\u9700\u8981\u64d4\u5fc3\u4fdd\u96aa\u7684\u4e8b\u55ce\uff1f<\/h3>\n\n\n\n<p>\u7d93\u6aa2\u9a57\u70ba ARPKD 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class=\"wp-block-heading\">\uff31\uff1a\u6211\u60a3\u6709 ARPKD \u7684\u5c0f\u5b69\u5c07\u4f86\u80fd\u6709\u81ea\u5df1\u7684\u5c0f\u5b69\u55ce\uff0c \u5982\u679c\u80fd\uff0c\u90a3\u4ed6\/\u5979\u6240\u751f\u7684\u5c0f\u5b69\u6703\u907a\u50b3 ARPKD \u55ce\uff1f<\/h3>\n\n\n\n<p>\uff21\uff1a ARPKD \u672a\u66fe\u76f4\u63a5\u6d89\u53ca\u904e\u751f\u6b96\u7cfb\u7d71\uff0c \u50c5\u5177\u6709\u8a72\u75c5\u75c7\u4e26\u4e0d\u6703\u6e1b\u640d\u751f\u5b69\u5b50\u7684\u6a5f\u6703\u3002 \u7136\u800c\uff0c\u7279\u5225\u50cf\u662f\u814e\u8870\u7aed\u4e4b\u985e\u7684 ARPKD \u91ab\u7642\u4e0a\u7684\u4f75\u767c\u75c7\uff0c \u662f\u5b58\u5728\u8457\u53ef\u80fd\u964d\u4f4e\u6210\u529f\u61f7\u5b55\u7684\u53ef\u80fd\u6027\u3002\u5982\u679c\u5b69\u5b50\u7684\u7236\u6bcd\u4e4b\u4e00\u662f ARPKD \u60a3\u8005\uff0c \u90a3\u9019\u500b\u5b69\u5b50\u4e5f\u6703\u6709 ARPKD \u7684\u3002<\/p>\n\n\n\n<h3 class=\"wp-block-heading\">\uff31\uff1aARPKD 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)\u5e7e\u500b\u6708\uff0c\u6216\u8a31\u9084\u4e0a\u4e86\u547c\u5438\u5668\uff0c\u9019\u5c31\u6703\u5f71\u97ff\u5b69\u5b50\u6700\u521d\u5e7e\u5e74\u7684\u767c\u80b2\u3002\u9019\u6a23\u7684\u5152\u7ae5\u5c07\u4e0d\u6703\u5efa\u7acb\u6b63\u5e38\u7684\u808c\u8089\u5f35\u529b\uff0c\u4e5f\u8a31\u4e0d\u80fd\u5920\u81ea\u884c\u6293\u63e1\u5976\u74f6\u3002 \u5c31\u50cf\u4efb\u4f55\u6b98\u75be\u8005\uff0c\u808c\u8089\u7684\u767c\u5c55\u9700\u8981\u900f\u904e\u984d\u5916\u52a0\u5f37\u7684\u935b\u7149\u8207\u6cbb\u7642\uff0c \u4ee5\u8ddf\u4e0a\u4e00\u822c\u5b69\u7ae5\u3002\u9019\u7a2e\u935b\u934a\u8207\u6cbb\u7642\uff0c\u65e9\u671f\u4ecb\u5165\u975e\u5e38\u6709\u5e6b\u52a9\u3002\u5982\u524d\u9762\u6240\u63d0\u5230\u7684\uff0c\u8a31\u591a\u814e\u81df\u75be\u75c5\u7684\u5b69\u5b50\u8981\u8ddf\u540c\u9f61\u5b69\u5b50\u4ee5\u76f8\u540c\u7684\u901f\u7387\u751f\u9577\u662f\u6709\u56f0\u96e3\u7684\u3002 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class=\"wp-block-heading\">\uff31\uff1a\u5225\u4eba\u662f\u5426\u80fd\u770b\u51fa\u6211\u7684\u5b69\u5b50\u6709\u4ec0\u9ebc\u4e0d\u5c0d\u52c1\uff1f<\/h3>\n\n\n\n<p>\uff21\uff1a\u6709\u53ef\u80fd\uff0c \u56e0\u70ba \u56e0\u70ba\u6709\u4e9b ARPKD \u5b69\u7ae5\u6703\u56e0\u70ba\u814e\u81df\u816b\u5927\u800c\u6709\u500b\u5927\u7684\u8179\u90e8\u3002 \u6b64\u5916\uff0c \u8a31\u591a ARPKD \u5b69\u7ae5\u6709\u6210\u9577\u7684\u554f\u984c\uff0c \u4ed6\u5011\u6703\u6bd4\u540c\u9f61\u5c0f\u5b69\u77ee\u5c0f\u8a31\u591a\u3002<\/p>\n\n\n\n<h3 class=\"wp-block-heading\">\uff31\uff1aARPKD \u5b69\u7ae5\u53ef\u4ee5\u904b\u52d5\u55ce\uff1f<\/h3>\n\n\n\n<p>\uff21\uff1a\u63a5\u89f8\u50cf\u662f\u6a44\u6b16\u7403\uff0c \u66f2\u68cd\u7403\u6216\u7c43\u7403\u4e4b\u985e\u7684\u904b\u52d5\uff0c \u6703\u4f7f\u5f97 ARPKD \u5b69\u7ae5\u589e\u52a0\u56e0\u78b0\u649e\u5c0e\u81f4\u56ca\u816b\u7834\u88c2\u7684\u98a8\u96aa\u3002\u5c0d\u65bc\u4e00\u500b\u6709\u975e\u5e38\u5927\u814e\u81df\u7684\u5b69\u5b50\uff0c\u751a\u81f3\u8dd1\u6b65\u90fd\u6703\u8b93\u4ed6\u5f88\u4e0d\u8212\u670d\u3002 ARPKD \u5152\u7ae5\u53e6\u4e00\u500b\u4ee4\u4eba\u64d4\u5fc3\u662f\u7531\u5fc3\u81df\u8870\u7aed(CHF)\u9020\u6210\u7684\u813e\u81df\u816b\u5927\u7834\u88c2\uff0c \u5118\u7ba1\u6709\u4e9b ARPKD \u5b69\u5b50\u6703\u9a0e\u81ea\u884c\u8eca\uff0c\u8dd1\u6b65\u548c\u6e38\u6cf3\uff0c \u4ed6\u5011\u4e5f\u6703\u5229\u7528\u9019\u500b\u7406\u7531\u907f\u514d\u767c\u751f\u72c0\u6cc1\u3002\u9ad4\u80b2\u6d3b\u52d5\u4e0d\u662f\u554f\u984c\uff0c\u4f46\u61c9\u8a72\u8003\u616e\u6bcf\u500b\u4eba\u8eab\u9ad4\u4e0a\u689d\u4ef6\u8207\u5065\u5eb7\u7684\u4e0d\u540c\uff0c\u4f86\u53d6\u6c7a\u5b69\u5b50\u904b\u52d5\u7684\u5f37\u5ea6\uff0c\u8a31\u591a ARPKD \u5b69\u5b50\u90fd\u4eab\u53d7\u5404\u7a2e\u9ad4\u80b2\u548c\u8ab2\u5916\u6d3b\u52d5\u3002 \u4e0d\u7ba1\u600e\u6a23\u904b\u52d5\uff0c\u975e\u5e38\u91cd\u8981\u7684\u662f\u8981\u5b69\u5b50\u5011\u651d\u53d6\u8db3\u5920\u7684\u6c34\u5206\u3002<\/p>\n\n\n\n<h3 class=\"wp-block-heading\">\uff31\uff1a\u6211\u7684\u5b69\u5b50\u90fd\u6703\u907a\u50b3 ARPKD \u55ce\uff1f<\/h3>\n\n\n\n<p>\uff21\uff1aARPKD\u5152\u7ae5\u7684\u5bb6\u9577\u61c9\u88ab\u544a\u77e5\uff0c \u6bcf\u4e00\u6b21\u61f7\u5b55\u7684\u5b69\u5b50\u5c07\u6709 1\/4 \u7684\u6a5f\u6703\u907a\u50b3\u75be\u75c5\u548c 1\/2 \u7684\u6a5f\u6703\u6210\u70ba\u75be\u75c5\u57fa\u56e0\u7684\u8f09\u9ad4\u3002 \u9019\u4e9b\u5b69\u5b50\u8ab0\u6703\u81f4\u75c5\uff0c\u8ab0\u53ea\u662f\u57fa\u56e0\u8f09\u9ad4\u4e0d\u6703\u751f\u75c5\uff0c\u7537\u6027\u548c\u5973\u6027\u98a8\u96aa\u4e5f\u90fd\u76f8\u540c\u3002<\/p>\n\n\n\n<h3 class=\"wp-block-heading\">\uff31\uff1a\u5982\u4f55\u5f97\u77e5\u6211\u7684\u672a\u51fa\u751f\u5b69\u5b50\u662f\u5426\u6703\u907a\u50b3\u5230 ARPKD<\/h3>\n\n\n\n<p>\uff21\uff1a\u900f\u904e\u4f7f\u7528\u57fa\u56e0\u6aa2\u6e2c\u6280\u8853\u9023\u9396\u5206\u6790(linkage analysis)\uff0c \u4e00\u500b \u201c\u9ad8\u98a8\u96aa\u201d \u5bb6\u5ead\u6216\u5df2\u7d93\u88ab\u8a3a\u65b7\u51fa\u81f3\u5c11\u6709\u4e00\u500b ARPKD \u5b69\u5b50\u7684\u5bb6\u5ead\u7522\u524d\u8a3a\u65b7\u51fa ARPKD \u662f\u5f88\u6709\u53ef\u80fd\u7684\u3002\u5efa\u8b70\uff0c \u5728\u61f7\u5b55 24 \u9031\u5f8c\u53ef\u4ee5\u5728\u7522\u524d\u6aa2\u67e5\u7528\u8d85\u97f3\u6ce2\u5100\u5668\u9032\u884c\u6aa2\u67e5\u5c0f\u5b69\u7f8a\u6c34\u4e2d\u814e\u81df\u60c5\u5f62\u3002<\/p>\n\n\n\n<h3 class=\"wp-block-heading\">\uff31\uff1a\u5982\u679c\u6211\u7684\u5b69\u5b50\u6c92\u6709ARPKD\u53cd\u800c\u662f\u81f4\u75c5\u57fa\u56e0\u7684\u651c\u5e36\u8005\uff0c\u9019\u662f\u4ec0\u9ebc\u610f\u601d\uff1f<\/h3>\n\n\n\n<p>\uff21\uff1a\u76ee\u524d\uff0c\u50b3\u7d71\u7684\u89c0\u9ede\u662f\uff0c\u9019\u7a2e\u75be\u75c5\u57fa\u56e0\u651c\u5e36\u8005\u4e0d\u6703\u9047\u5230\u4efb\u4f55ARPKD\u7684\u5178\u578b\u75c5\u5fb5\u3002<\/p>\n\n\n\n<h3 class=\"wp-block-heading\">\uff31\uff1aARPKD \u5b69\u7ae5\u60a3\u8005\u7684\u5bb6\u9577\u8f03\u56f0\u96e3\u8a13\u7df4\u4ed6\u5011\u5927\u5c0f\u4fbf\u81ea\u7406\u55ce\uff1f<\/h3>\n\n\n\n<p>\uff21\uff1a\u56e0\u70ba\u5c3f\u91cf\u7684\u95dc\u4fc2\uff0c \u6709\u4e9b\u5bb6\u9577\u9ad4\u9a57\u5230\u5f88\u56f0\u96e3\u7684\u5927\u5c0f\u4fbf\u81ea\u7406\u8a13\u7df4\uff0c \u6709\u4e9b\u5bb6\u9577\u8aaa\uff0c\u4ed6\u5011\u7684 ARPKD \u5b69\u5b50\u6bd4\u4e00\u822c\u7684\u5b69\u5b50\u8f03\u665a\u9032\u884c\u8a13\u7df4\uff0c \u56e0\u70ba\u904e\u591a\u7684\u5c3f\u6db2\u53ef\u80fd\u662f\u4e00\u500b\u554f\u984c\uff0c\u5f88\u591a\u5b69\u5b50\u767d\u5929\u8a13\u7df4\uff0c\u665a\u4e0a\u7a7f\u4e0a\u5c3f\u5e03\u3002<\/p>\n\n\n\n<h3 class=\"wp-block-heading\">\uff31\uff1a\u6211\u7684\u5b69\u5b50\u6703\u7d93\u6b77\u54ea\u4e9b\u60c5\u7dd2\u7684\u554f\u984c\uff1f<\/h3>\n\n\n\n<p>\uff21\uff1a\u5b69\u5b50\u7684\u60c5\u7dd2\u554f\u984c\u53d6\u6c7a\u65bc\u5b69\u5b50\u548c\u81ea\u5df1\u7684\u500b\u6027\u3002 \u4e0d\u540c\u7684\u5bb6\u5ead\uff0c\u5b69\u5b50\u9762\u5c0d\u6162\u6027\u75be\u75c5\u6240\u5e36\u4f86\u7684\u58d3\u529b\u6709\u6240\u4e0d\u540c\u3002 \u6709\u4e9b\u5b69\u5b50\u5728\u91cd\u8907\u7684\u91ab\u7642\u5e72\u9810\u5f8c\u6703\u7d93\u6b77\u5230\u5275\u50b7\u5f8c\u75c7\u5019\u7fa4\uff08PTSD)\u3002 \u4ed6\u5011\u53ef\u80fd\u6703\u51fa\u73fe\uff0c\u70ba\u4e86\u8d95\u4e0a\u540c\u9f61\u5b69\u5b50\u800c\u7522\u7a31\u7684\u632b\u6298\u611f\u6240\u5e36\u4f86\u7684\u884c\u70ba\u554f\u984c\uff0c 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