System building and improvement for the diagnosis and treatment of rare diseases in Shanghai, China.

Intractable Rare Dis Res

Department of Health Policy Research, Shanghai Health Development Research Center, Shanghai Medical Information Center, Shanghai, China.

Published: November 2018

AI Article Synopsis

  • Shanghai is a leader in rare disease prevention and treatment in China, establishing specialized centers in February 2018 to enhance care.
  • The city has developed comprehensive clinical pathways and services including diagnosis, treatment, and training, creating a robust service system for these patients.
  • The improvements have increased accessibility to medical services for rare disease patients, alleviating their burden and serving as a model for other regions in China.

Article Abstract

Shanghai has always attached importance to the prevention and treatment of rare diseases and has been at the forefront in China. The Shanghai Rare Diseases Diagnosis and Treatment Center, Shanghai Children's Rare Diseases Diagnosis and Treatment Center, and Shanghai Rare Diseases Specialist Clinic were established in February 2018. Moreover, with the development of clinical pathways for rare diseases and the provision of related services such as diagnosis, treatment, screening, information and training, the service system for diagnosis and treatment of rare diseases in Shanghai has formed, which greatly improves the accessibility of medical services for patients with rare diseases in Shanghai and surrounding areas, and is of great significance in reducing the burden on patients with rare diseases. Meanwhile, it also gives an important reference for other regions of China for providing rare disease diagnosis and treatment services.

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Source
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6290848PMC
http://dx.doi.org/10.5582/irdr.2018.01129DOI Listing

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