Literature DB >> 29862160

China has officially released its first national list of rare diseases.

Jiangjiang He1,2, Qi Kang1, Jiahao Hu3, Peipei Song1, Chunlin Jin1.   

Abstract

Over the past few years, the Chinese Government has paid greater attention to rare diseases and it has incorporated rare diseases in national health strategy and planning. On May 22, 2018, the Chinese Government officially released its first list of rare diseases, which included 121 rare diseases. The list was published to facilitate greater societal awareness of rare diseases, to improve the ability of front-line medical staff to treat rare diseases, to introduce incentives for research and development of orphan drugs, and to increase the availability of medicines for rare diseases. This effort will enhance the management of rare diseases in China, raise the level of diagnosis and treatment for rare diseases, and safeguard the health-related rights and interests of patients with rare diseases. The classification of rare diseases is based on a common international standards, which will promote international cooperation in drug research and policymaking with regard to rare diseases.

Entities:  

Keywords:  Rare diseases; disease classification; disease management; orphan drugs

Year:  2018        PMID: 29862160      PMCID: PMC5982625          DOI: 10.5582/irdr.2018.01056

Source DB:  PubMed          Journal:  Intractable Rare Dis Res        ISSN: 2186-3644


  11 in total

1.  The definition of rare disease in China and its prospects.

Authors:  Yanqin Lu; Jinxiang Han
Journal:  Intractable Rare Dis Res       Date:  2022-02

Review 2.  Incidence and prevalence of 121 rare diseases in China: Current status and challenges: 2022 revision.

Authors:  Yanqin Lu; Qingxia Gao; Xiuzhi Ren; Junfeng Li; Dan Yang; Zijian Zhang; Jinxiang Han
Journal:  Intractable Rare Dis Res       Date:  2022-08

3.  Demographics, in-hospital analysis, and prevalence of 33 rare diseases with effective treatment in Shanghai.

Authors:  Xiaoshu Cai; Georgi Z Genchev; Ping He; Hui Lu; Guangjun Yu
Journal:  Orphanet J Rare Dis       Date:  2021-06-08       Impact factor: 4.123

4.  Improving rare disease classification using imperfect knowledge graph.

Authors:  Xuedong Li; Yue Wang; Dongwu Wang; Walter Yuan; Dezhong Peng; Qiaozhu Mei
Journal:  BMC Med Inform Decis Mak       Date:  2019-12-05       Impact factor: 2.796

5.  Analysis of economic burden and its associated factors of twenty-three rare diseases in Shanghai.

Authors:  Xiaoshu Cai; Hui Yang; Georgi Z Genchev; Hui Lu; Guangjun Yu
Journal:  Orphanet J Rare Dis       Date:  2019-10-22       Impact factor: 4.123

Review 6.  A scoping review and proposed workflow for multi-omic rare disease research.

Authors:  Katie Kerr; Helen McAneney; Laura J Smyth; Caitlin Bailie; Shane McKee; Amy Jayne McKnight
Journal:  Orphanet J Rare Dis       Date:  2020-04-28       Impact factor: 4.123

7.  The global carrier frequency and genetic prevalence of Upshaw-Schulman syndrome.

Authors:  Ting Zhao; Shanghua Fan; Liu Sun
Journal:  BMC Genom Data       Date:  2021-11-17

8.  Evaluating the national system for rare diseases in China from the point of drug access: progress and challenges.

Authors:  Luyao Qiao; Xin Liu; Junmei Shang; Wei Zuo; Tingting Xu; Jinghan Qu; Jiandong Jiang; Bo Zhang; Shuyang Zhang
Journal:  Orphanet J Rare Dis       Date:  2022-09-10       Impact factor: 4.303

9.  A questionnaire-based study to comprehensively assess the status quo of rare disease patients and care-givers in China.

Authors:  Xuefeng Li; Meiling Liu; Jinduan Lin; Bingzhe Li; Xiangyu Zhang; Shu Zhang; Zijuan Lu; Jianyong Zhang; Jincheng Zhou; Li Ou
Journal:  Orphanet J Rare Dis       Date:  2021-07-22       Impact factor: 4.123

10.  Why is misdiagnosis more likely among some people with rare diseases than others? Insights from a population-based cross-sectional study in China.

Authors:  Dong Dong; Roger Yat-Nork Chung; Rufina H W Chan; Shiwei Gong; Richard Huan Xu
Journal:  Orphanet J Rare Dis       Date:  2020-10-28       Impact factor: 4.123

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