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Digital-Intellectualized Upgrade and Clinical Application of National Rare Diseases Registry System of China

• Authors : GUO Jian; JIN Ye; LIU Peng

Subjects: rare diseases; multi-modal data; auxiliary diagnosis and treatment

• Source: 罕见病研究, Vol 4, Iss 1, Pp 54-60 (2025)

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Research on the Informed Consent Challenges and Countermeasures in Pediatric Clinical Trials for Rare Diseases

• Authors : CHENG Long; PAN Ruili

Subjects: rare diseases; pediatric clinical trials; ethical dilemmas

• Source: Xiehe Yixue Zazhi, Vol 16, Iss 6, Pp 1629-1635 (2025)

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Diagnosis and Comprehensive Management of Rare Diseases: the Indispensable Role of General Practitioners

• Authors : GU Jie, HUANG Yanyan

Subjects: rare diseases; general practitioners; comprehensive management

• Source: Zhongguo quanke yixue, Vol 28, Iss 16, Pp 1955-1960 (2025)

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欧盟罕见病用药审评审批分析及其对我国的启示.

• Authors : 吴文文¹ ; 季 兴¹; 倪明明¹

• Source: Evaluation & Analysis of Drug-Use in Hospitals of China / Zhongguo Yiyuan Yongyao Pingjia yu Fenxi. 2024, Vol. 24 Issue 11, p1402-1408. 7p.

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To Promote the Application of Genetic Testing Technology in the Diagnosis and Treatment of Rare Diseases in China-Establishment and Work Prospect of Medical Genome Committee

• Authors : China Alliance for Rare Diseases; Beijing Society of Rare Disease Clinical Care and Accessibility; Medical Genome Committee

Subjects: rare diseases; genomics; whole genome sequencing

• Source: 罕见病研究, Vol 3, Iss 3, Pp 275-279 (2024)

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A Review of the Data-Driven Policy Making of Medical Financial Assistance for Rare Diseases: Current Situation, Trends and Opportunities

• Authors : DUAN Yuehan; FAN Zhiyu; LI Qianhui

Subjects: rare diseases; orphan drugs; medical financial assistance

• Source: 罕见病研究, Vol 4, Iss 1, Pp 39-45 (2025)

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The Application of Digital Intelligence Technology in the Management of Non-Hospitalized Patients with Rare Diseases

• Authors : YAO Yiyang; GAO Yi; GUO Yixuan

Subjects: rare diseases; digital intelligence; management in non-hospitalized setting

• Source: 罕见病研究, Vol 4, Iss 1, Pp 46-53 (2025)

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The Progress of Research on Data Sharing of Rare Diseases Driven by Digital Intelligence

• Authors : GU Yiwu; WEN Qiaorui; LIU Qikai

Subjects: rare diseases; digital intelligence; data sharing

• Source: 罕见病研究, Vol 4, Iss 1, Pp 61-69 (2025)

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Compliance Risk Management of Investigator Initiated Trials on Children Rare Diseases: Medical Institution Perspective

• Authors : ZHANG Jingqi; ZUO Liandong; GAO Xueqi

Subjects: investigator initiated trial; children; rare diseases

• Source: 罕见病研究, Vol 4, Iss 1, Pp 132-138 (2025)

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Using Digital Intelligence in Promoting Mechanism for Medical Care Insurance for Rare Diseases: Concepts and Applications

• Authors : YANG Xinyu; ZHANG Yuzheng; WANG Shengfeng

Subjects: rare diseases; medical care insurance; digital intelligence

• Source: 罕见病研究, Vol 4, Iss 1, Pp 30-38 (2025)

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