Literature DB >> 30881864

Network established to collaborate on diagnosis and treatment of rare diseases in China: A strategic alliance backed by tiered healthcare is the key to the future.

Qianli Ren1, Jianbin Wang2.   

Abstract

Rare diseases are an important public health issue and a challenge to healthcare. Over the past few years, China has actively worked to improv rare disease care and orphan drugs for rare diseases, but many challenges still remain. In order to further promote measures to combat rare diseases, the "National Network to Collaborate on Diagnosis and Treatment of Rare Diseases" was established by the National Health Commission of the People's Republic of China on February 12, 2019. This network for collaboration consists of 324 hospitals nationwide, and its aim is to set up a practical mechanism for an effective alliance by different tiers of the healthcare system. The strategy for collaboration includes six programs: i) to establish a mechanism for collaboration, ii) to implement standards of care, iii) to enhance quality control, iv) to ensure the supply of drugs, v) to set up a registry, and vi) to enhance clinical research. These programs will play a pivotal role in combating rare diseases in the future and eventually achieving the goal of creating a proper and consistent mechanism to treat and manage rare diseases.

Entities:  

Keywords:  Rare diseases; network for collaboration; tiered healthcare

Year:  2019        PMID: 30881864      PMCID: PMC6409119          DOI: 10.5582/irdr.2019.01024

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


  4 in total

1.  Shortcutting the diagnostic odyssey: the multidisciplinary Program for Undiagnosed Rare Diseases in adults (UD-PrOZA).

Authors:  Nika Schuermans; Dimitri Hemelsoet; Bart Dermaut; Bruce Poppe; Wim Terryn; Sanne Steyaert; Rudy Van Coster; Paul J Coucke; Wouter Steyaert; Bert Callewaert; Elke Bogaert; Patrick Verloo; Arnaud V Vanlander; Elke Debackere; Jody Ghijsels; Pontus LeBlanc; Hannah Verdin; Leslie Naesens; Filomeen Haerynck; Steven Callens
Journal:  Orphanet J Rare Dis       Date:  2022-05-23       Impact factor: 4.303

2.  Health service security of patients with 8 certain rare diseases: evidence from China's national system for health service utilization of patients with healthcare insurance.

Authors:  Rui Min; Xiaoyan Zhang; Pengqian Fang; Biyan Wang; He Wang
Journal:  Orphanet J Rare Dis       Date:  2019-08-20       Impact factor: 4.123

3.  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

4.  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

  4 in total

北京卡尤迪生物科技股份有限公司 © 2022-2023.