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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
Abstract
PDF
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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
Abstract
PDF
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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
Abstract
PDF
(
)
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
Abstract
PDF
(
)
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
Abstract
PDF
(
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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
Abstract
PDF
(
)
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
Abstract
PDF
(
)
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
Abstract
PDF
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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
Abstract
PDF
(
)
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
Abstract
PDF
(
)
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
Abstract
PDF
(
)
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
Abstract
PDF
(
)
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
Abstract
PDF
(
)
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
Abstract
PDF
(
)
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
Abstract
PDF
(
)
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
Abstract
PDF
(
)
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
Abstract
PDF
(
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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
Abstract
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