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Intractable & Rare Diseases Research

IF1.6
论文数22
被引数
期刊论文 22
发表时间
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The "China model" for rare disease governance: Policy framework, local implementation, and pathways for optimization“中国模式”在罕见病治理中的应用：政策框架、地方实施与优化路径
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IF1.6
delete2026-05-01
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PREAI
deleteZhang, Xiumei; Luan, Jing; Mu, Yan; Zhang, Keke; Han, Zhiyan; Han, Jinxiang
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Surgical treatment and prognosis of type II congenital extrahepatic portosystemic shunts: A single-center experience of 31 cases先天性肝外门体分流术II型的手术治疗和预后：单中心31例经验
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IF1.6
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deleteHu, Yanqin; Gao, Shang; Jiang, Hongxiang; Huo, Yuhao; Liu, Yuanzhe; Yang, Rui; Liu, Weizheng; Cao, Yinbiao; Duan, Weidong; Tang, Haowen
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A scoping review of dietary interventions to treat obesity among Prader-Willi syndrome individuals (vol 14, pg 240, 2025)对Prader-Willi综合征个体进行饮食干预治疗肥胖的综述（卷14，页240，2025）
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IF1.6
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deleteAman, Marwa; Hamid, Haslina Abdul; Rajikan, Roslee
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Prevalence and maternal-child clinical and socioeconomic factors associated with congenital anomalies in a Mexican hospital-based setting墨西哥医院环境中先天性畸形患病率及其相关的母体-儿童临床和社会经济因素
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IF1.6
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deleteSalinas-Torres, Victor Michael; Salinas-Torres, Rafael Angel
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A neurologist's guide to VEXAS syndrome: Differentiating somatic autoinflammation from autoimmune mimics神经科医师指南：区分体细胞自身炎症与自身免疫性模仿
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IF1.6
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deleteMitsoudis, Nikolaos; Nikolakakis, Ioannis; Apsemidou, Athanasia; Bakirtzis, Christos; Grigoriadis, Nikolaos
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The skin as a sentinel organ for neurodegeneration: An underrecognized target for dementia prevention皮肤作为神经退行性变的哨兵器官：痴呆预防中被忽视的目标
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IF1.6
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deleteHan, Yue; Zhou, Chu; Wang, Ping; Karako, Kenji; Song, Peipei
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Beyond malignancies: Clinical advancements of CAR T-cell in the treatment of autoimmune diseases超越恶性肿瘤：CAR T细胞在自身免疫病治疗中的临床进展
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IF1.6
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deleteFang, Xing; Wei, Ruili; Zhu, Wenli; Hu, Yongxian; Liang, Hui
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Understanding the disease burden and unmet needs of patients with primary immunodeficiency in China: A quantitative study了解中国原发性免疫缺陷病患者疾病负担和未满足需求：一项定量研究
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IF1.6
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deleteLi, Linguo; Chen, Yinru; He, Zikai; Li, Qun; Huang, Rufang
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From presence to provenance: Building substantive infrastructure for China's rare disease ecosystem从存在到来源：为中国罕见病生态系统构建实质性基础设施
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IF1.6
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deleteYang, Rachel
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Policy lessons regarding medical security for rare diseases in China: Insights from Zhejiang Province through the multiple streams framework关于中国罕见病医疗保障的政策启示：基于浙江省的多源流框架视角
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deleteWang, Miao; Rong, Chunyu; Wang, Pingyang
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The imperative for national legislation on rare diseases in China: A policy review and call to action中国罕见病国家立法的必要性：政策回顾与行动呼吁
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IF1.6
delete2026-02-01
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deleteLi, Yangyang; Liu, Zheng; Huang, Rufang; Liu, Yugang
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How to evaluate rare disease policy effectiveness based on policy modeling consistency (PMC) index model: A quantitative assessment of policy implementation in China如何基于政策建模一致性(PMC)指数模型评估罕见病政策有效性：对中国政策实施情况的定量评估
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deleteZhao, Yue; Zhang, Xinyu; He, Da; Li, Yingting; Dong, Rongxue; Gu, Yichun; Xie, Jing
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Comparative analysis of adverse event reporting signals between Satralizumab and Inebilizumab in neuromyelitis optica spectrum disorder: A pharmacovigilance study using the FDA Adverse Event Reporting System视神经脊髓炎谱系障碍中萨特利珠单抗与伊尼珠单抗不良反应报告信号的比较分析：一项基于FDA不良事件报告系统的药物警戒研究
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deleteZhao, Yuanyuan; Zhang, Yanjing; Yu, Jing; Zhou, Chunhua; Hao, Yupei; Liu, Yan; Wang, Jing; Li, Shuying; Zhao, Zengren
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From system building to global engagement: Current significance of and future directions for rare disease research in China从体系建设到全球参与：中国罕见病研究的当前意义及未来方向
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deleteTang, Wei
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Current status and challenges of biologic targeted therapy for myasthenia gravis in China中国重症肌无力生物靶向治疗的现状与挑战
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deleteGu, Shengying; Zhao, Chongbo
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Progress in the research and pharmacoeconomic evaluation of drugs and devices for rare diseases in China中国罕见病药物和医疗器械的研究进展与药物经济学评价
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deleteHu, Shanlian
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Foods for special medical purposes for the dietary therapy of rare diseases: Current status and future prospects特殊医学用途配方食品在罕见病饮食疗法中的应用：现状与未来展望
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deleteZhang, Ting; Wang, Yun; Shi, Cuiping; Zi, Ye; Cai, Wei; Zhong, Jian
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From co-creation to compounding value: A new model of rare disease science communication in China从共同创造到复合价值：中国罕见病科学传播的新模式
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deleteChen, Yiwei
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Multidisciplinary approach to the assessment and management of children with Fabry disease: Insights from the Chinese Children Genetic Kidney Disease Database多学科方法评估和管理法布里病患儿：来自中国儿童遗传性肾脏疾病数据库的见解
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deleteWang, Jing; Liu, Jialu; Chen, Jing; Zhang, Aihua; Mao, Jianhua; Shen, Tong; Jiang, Xiaoyun; Wang, Mo; Tao, Yuhong; Zhao, Bo; Wang, Xiaowen; Li, Zhihui; Chen, Ai; Chen, Chaoying; Zhang, Bili; Zhang, Dongfeng; Zhao, Lijun; Zhao, Yuhua; Bao, Ying; Bai, Ling; Liu, Cuihua; Wang, Feiyan; Hu, Fangqi; Chen, Meili; Lv, Xueyun; Sun, Shuzhen; Shen, Qian; Xu, Hong
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Visualization analysis of the use of traditional Chinese medicine in the diagnosis and treatment of rare diseases in mainland China based on CiteSpace基于CiteSpace对中国大陆地区传统中医疗治罕见病的可视化分析
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deleteShi, Yun; Xiao, Shijing; He, Da
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