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作 者:莫小兰 邓后亮 崇静 张雅婷 舒蓉 叶美琳 曾水月 钟秀秀 谢国权 陈孝[2] 伍俊妍[3] 陈泽彬[4] 李亦蕾[5] 郑萍[5] 黎小妍[6] 陈攀[2] 方瑞[7] 叶卫军 喻珊珊[9] 曾春华 刘丽 梁立阳[11] 苏喆[12] 郑志华 MO Xiaolan;DENG Houliang;CHONG Jing;ZHANG Yating;SHU Rong;YE Meilin;ZENG Shuiyue;ZHONG Xiuxiu;XIE Guoquan;CHEN Xiao;WU Junyan;CHEN Zebin;LI Yilei;ZHENG Ping;LI Xiaoyan;CHEN Pan;FANG Rui;YE Weijun;YU Shanshan;ZENG Chunhua;LIU Li;LIANG Liyang;SU Zhe;ZHENG Zhihua(Department of Pharmacy,Guangzhou Women and Children's Medical Center,Guangzhou Medical University,Guangzhou,Guangdong 510623,China;Department of Pharmacy,The First Afiliated Hospital,Sun Yat-sen University,Guangzhou,Guangdong 510700,China;Department of Pharmacy,Sun Yat-Sen Memorial Hospital,Sun Yat-Sen University,Guangzhou,Guangdong 510120,China;Department of Pharmacy,Shenzhen Children's Hospital,Shenzhen,Guangdong 518000,China;Department of Pharmacy,Nanfang Hospital,Southern Medical University,Guangzhou,Guangdong 515399,China;Department of Pharmacy,The Sixth Affiliated Hospital,Sun Yat-Sen University,Guangzhou,Guangdong 510510,China;Department of Pharmacy,Guangdong Women and Children Hospital,Guangzhou,Guangdong 510010,China;Department of Pharmacy,Dongguan Eighth People's Hospital,Dongguan Children's Hospital,Dongguan,Guangdong 523000,China;Department of Pharmacy,Zhujiang Hospital,Southern Medical University,Guangzhou,Guangdong 510145,China;Department of Genetics and Endocrinology,Guangzhou Women and Children's Medical Center,Guangzhou Medical University,Guangzhou,Guangdong 510623,China;Department of Pediatric Endocrinology,Sun Yat-Sen Memorial Hospital,Sun Yat-Sen University,Guangzhou,Guangdong 510120,China;Department of Endocrinology,Shenzhen Children's Hospital,Shenzhen,Guangdong 518000,China;Guang Dong Phamaceutical Association,Guangzhou,Guangdong 510080,China)
机构地区:[1]广州医科大学附属妇女儿童医疗中心药学部,广东广州510623 [2]中山大学附属第一医院药学部,广东广州510700 [3]中山大学孙逸仙纪念医院药学部,广东广州510120 [4]深圳市儿童医院药学部,广东深圳518000 [5]南方医科大学南方医院药学部,广东广州515399 [6]中山大学附属第六医院药学部,广东广州510510 [7]广东省妇幼保健院药学部,广东广州510010 [8]东莞市第八人民医院药剂科,广东东莞523000 [9]南方医科大学珠江医院药学部,广东广州510145 [10]广州医科大学附属妇女儿童医疗中心遗传与内分泌科,广东广州510623 [11]中山大学孙逸仙纪念医院儿科神经内分泌科,广东广州510120 [12]深圳市儿童医院内分泌科,广东广州518000 [13]广东省药学会,广东广州510080
出 处:《今日药学》2025年第2期81-86,共6页Pharmacy Today
基 金:国家自然科学基金(82103109);PSM广东药学科普研究基金(先声基金,2024KP89)。
摘 要:低血磷性佝偻病/骨软化症是一组由于遗传性或获得性病因导致肾脏排磷增多,引起以低磷血症为特征的骨骼矿化障碍性疾病,被纳入我国《第一批罕见病目录》。低血磷性佝偻病/骨软化症患者药物治疗主要是以口服中性磷酸盐溶液为主的传统治疗。然而,由于药物可及性差,医务人员对该疾病的认识和重视程度不高等原因,造成部分患者得不到长期正规的治疗。为保障罕见病患者用药安全、有效,特制订本专家共识,规范口服中性磷酸盐的组织与管理、采购、储存、处方开具和调剂、使用、药学监护等内容,以期为广大医疗机构管理和使用口服中性磷酸盐提供参考,也为其临床应用提供全面的药学服务和指导。Hypophosphatemic rickets/osteomalacia is a group of bone mineralization disorders characterized by hypophosphatemia caused by genetic or acquired factors leading to increased renal phosphate excretion.It has been included in the first batch of rare disease list in China.Patients with hypophosphatemic rickets/osteomalacia are primarily treated with traditional therapy,mainly consisting of oral neutral phosphate solutions.However,due to poor drug accessibility and low awareness and prioritization of the disease among healthcare professionals,some patients are unable to receive long-term standardized treatment.In order to ensure the safe and effective use of medications for patients with the rare disease,this expert consensus has been developed to standardize the organization and management,procurement,storage,prescription,dispensing,use and pharmaceutical care of oral phosphate salts.It aims to provide guidance for the management and use of oral phosphate salts in medical institutions,as well as comprehensive pharmaceutical services and guidance for their clinical application.
关 键 词:低血磷性佝偻病/骨软化症 口服中性磷酸盐 专家共识 罕见病
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