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Current Status and Challenges of the Development on Rare Disease Multi-Security Mechanisms Driven by Data Intelligence in China
ZHAN Siyan, ZHANG Shuyang
2025, 4(1): 1-6. DOI: 10.12376/j.issn.2097-0501.2025.01.001
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The Current Status and Policy Recommendations of Multi-Security Mechanism for Rare Diseases in China
ZHANG Lianxue, LIU Yuanli
2025, 4(1): 7-13. DOI: 10.12376/j.issn.2097-0501.2025.01.002
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Current Situation, Trend, and Opportunity of Applying Blockchain to the Supply Chain of Orphan Drugs
LI Wenyan, YOU Yile, WU Jindong, LI Xinrui, JIANG Yunyun, WANG Shengfeng
2025, 4(1): 14-21. DOI: 10.12376/j.issn.2097-0501.2025.01.003
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The Current Status and Prospects of the Application of Digital Technology in the Field of Pharmacovigilance of Rare Diseases
CAO Ying, LIU Xinru, WANG Shengfeng, ZHUO Lin
2025, 4(1): 22-29. DOI: 10.12376/j.issn.2097-0501.2025.01.004
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Using Digital Intelligence in Promoting Mechanism for Medical Care Insurance for Rare Diseases: Concepts and Applications
YANG Xinyu, ZHANG Yuzheng, WANG Shengfeng, GUO Wudong
2025, 4(1): 30-38. DOI: 10.12376/j.issn.2097-0501.2025.01.005
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A Review of the Data-Driven Policy Making of Medical Financial Assistance for Rare Diseases: Current Situation, Trends and Opportunities
DUAN Yuehan, FAN Zhiyu, LI Qianhui, PENG Zhaiwen
2025, 4(1): 39-45. DOI: 10.12376/j.issn.2097-0501.2025.01.006
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The Application of Digital Intelligence Technology in the Management of Non-Hospitalized Patients with Rare Diseases
YAO Yiyang, GAO Yi, GUO Yixuan, QIN Zhuoyue, ZHANG Yaofang, JING Jiaqi, XIE Jing, GUO Jian, ZHANG Shuyang
2025, 4(1): 46-53. DOI: 10.12376/j.issn.2097-0501.2025.01.007
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Digital-Intellectualized Upgrade and Clinical Application of National Rare Diseases Registry System of China
GUO Jian, JIN Ye, LIU Peng, ZHANG Dingding, CHEN Limeng, ZHU Yicheng, ZHANG Shuyang, on behalf of the administrative group of National Rare Diseases Registry System of China
2025, 4(1): 54-60. DOI: 10.12376/j.issn.2097-0501.2025.01.008
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The Progress of Research on Data Sharing of Rare Diseases Driven by Digital Intelligence
GU Yiwu, WEN Qiaorui, LIU Qikai, GONG Mengchun, WANG Shengfeng
2025, 4(1): 61-69. DOI: 10.12376/j.issn.2097-0501.2025.01.009
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Phenotypic and Genotypic Characterization of Chinese Adult Patients With NLRP3-Associated Autoinflammatory Disease With Hearing Loss
WU Bingxuan, LUO Yi, WU Di, WANG Yi, SHEN Min
2025, 4(1): 70-74. DOI: 10.12376/j.issn.2097-0501.2025.01.010
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A Case Report of Pachydermoperiostosis by Multidisciplinary Diagnosis and Treatment
ZHANG Jie, ZHANG Yan, HUO Li, LYU Ke, WANG Tao, XIA Ze'nan, LONG Xiao, XU Kexin, WU Nan, YANG Bo, XIA Weibo, HU Rongrong, CHEN Limeng, LI Ji, HONG Xia, ZHANG Yan, ZUO Yagang
2025, 4(1): 75-82. DOI: 10.12376/j.issn.2097-0501.2025.01.011
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Consensus on Complement Inhibitor Therapy and Management of Paroxysmal Nocturnal Hemoglobinuria
Red Blood Cell Disease (Anemia) Group, Chinese Society of Hematology, Chinese Medical Association
2025, 4(1): 83-95. DOI: 10.12376/j.issn.2097-0501.2025.01.012
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Pharmacokinetics Guided Personalized Management of Hemophilia Rehabilitation: A Chinese Consensus Based on Modified Delphi
Hemophilia Treatment Center Collaborative Network of China
2025, 4(1): 96-105. DOI: 10.12376/j.issn.2097-0501.2025.01.013
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A Successful Case of Vemurafenib and Rituximab for Relapsed Hairy Cell Leukemia
QIU Yuchong, LI Meizi, ZHANG Lu, LI Jian
2025, 4(1): 106-111. DOI: 10.12376/j.issn.2097-0501.2025.01.014
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The Application Status and Trends of Data-Intelligence Technology in the Diagnosis of Lysosomal Storage Diseases
DU Xinyu, WANG Shengfeng, XIE Jing, GUO Jian, ZHANG Shuyang
2025, 4(1): 112-121. DOI: 10.12376/j.issn.2097-0501.2025.01.015
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Current Research Status of Digital Technology in the Rehabilitation of Rare Neurological and Muscular Diseases
GUO Yixuan, GAO Yi, YAO Yiyang, QIN Zhuoyue, ZHANG Yaofang, JING Jiaqi, XIE Jing, GUO Jian, ZHANG Shuyang
2025, 4(1): 122-131. DOI: 10.12376/j.issn.2097-0501.2025.01.016
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Compliance Risk Management of Investigator Initiated Trials on Children Rare Diseases: Medical Institution Perspective
ZHANG Jingqi, ZUO Liandong, GAO Xueqi, SI Wenyue, LUO Rui, WU Qiang, ZHOU Wenhao
2025, 4(1): 132-138. DOI: 10.12376/j.issn.2097-0501.2025.01.017
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International Status of Using Digital and Intelligent Technology to Ensure Access to Medication of Rare Diseases and Prospects for System Improvement in China
ZHAO Qi, FU Yihan, SUN Jing
2025, 4(1): 139-148. DOI: 10.12376/j.issn.2097-0501.2025.01.018
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