ArticleOrphanet journal of rare diseases2014
China launched a pilot project to improve its rare disease healthcare levels.
Article in Orphanet journal of rare diseases, 2014. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 14 papers.
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Who cites it
14 citing papers in PubMed.
- Characteristics of rare diseases cases: A summary analysis of hospitalized patients at a hospital in Western China from 2015 to 2023.Intractable & rare diseases research · 2025Article
- Rare but not to be overlooked: Epidemiology and strategies for rare dermatological diseases in China.Intractable & rare diseases research · 2025Review
- National Rare Diseases Registry System (NRDRS): China's first nation-wide rare diseases demographic analyses.Orphanet journal of rare diseases · 2021Article
- Multicentre, prospective registry study of amyotrophic lateral sclerosis in mainland China (CHALSR): study protocol.BMJ open · 2020Article
- A compilation of national plans, policies and government actions for rare diseases in 23 countries.Intractable & rare diseases research · 2018Review
- Comparing regional models of congenital bleeding disorders: preliminary steps in the Italian context.BMC research notes · 2017Article
- Review of 11 national policies for rare diseases in the context of key patient needs.Orphanet journal of rare diseases · 2017Review
- Innovative measures to combat rare diseases in China: The national rare diseases registry system, larger-scale clinical cohort studies, and studies in combination with precision medicine research.Intractable & rare diseases research · 2017Review
- Challenges in orphan drug development and regulatory policy in China.Orphanet journal of rare diseases · 2017Review
- Fragile X Syndrome: Prevalence, Treatment, and Prevention in China.Frontiers in neurology · 2017Review
- Orphan drug development in China - Turning challenges into opportunities.Intractable & rare diseases research · 2016Article
- A risk factor analysis on disease severity in 47 premature infants with bronchopulmonary dysplasia.Intractable & rare diseases research · 2015Article
- Fragile X syndrome as a rare disease in China - Therapeutic challenges and opportunities.Intractable & rare diseases research · 2015Review
- Pseudoxanthoma elasticum: A review of 86 cases in China.Intractable & rare diseases research · 2014Review
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3 authors.
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Abstract
China is facing the great challenge of serving the world's largest rare disease population. It is necessary to develop a specific medical plan to increase the levels of optimal prevention, diagnosis and treatment of rare diseases under the existing clinical service structures in China. In 2013, China launched its first pilot project focused on 20 representative rare diseases. A national network including approximately 100 provincial or municipal medical centers has been established to enable collaboration on rare diseases across China. The main objectives for this project are to develop and apply medical guidelines and clinical pathways for rare diseases, to establish a rare disease patient registry and data repository system, and to promote molecular testing for rare genetic disorders. This project also emphasizes building close links among the collaborative network, clinicians on the frontlines in basic medical services institutions and rare disease patient organizations. Primarily, this project expects to develop an actionable medical services plan to increase the delivery of quality healthcare for individuals and families living with rare diseases in China within five years.
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