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.
Highlights
China’s is facing the great challenge of servicing the world’s largest rare disease population
Several medical strategies critical to discovery and treatment of rare diseases have been implemented in China, such as newborn screening [1], and medical expenses reimbursement for children with congenital heart disease and leukemia [2], the Chinese public health insurance system does not cover the specific medical requirement of most rare diseases patients nor internationally recognized orphan drugs due to a lack of legislation
The project is first committed to organizing experienced medical centers specializing in the abovementioned 20 rare diseases and to establishing the corresponding medical guidelines and clinical pathways
Summary
China’s is facing the great challenge of servicing the world’s largest rare disease population. Genetic tests are usually unavailable for most of the patients with rare genetic diseases and their doctors because of the scarcity of molecular diagnostic resources and their associated high costs in China. A national collaborate network involving more than 100 provincial and municipal medical centers was established by China Rare Diseases Prevention and Treatment Alliance.
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