AI Article Synopsis

  • Rare diseases present significant public health challenges, and while China has made progress in improving care and orphan drug access, significant hurdles still exist.
  • In response, the National Health Commission of China launched the "National Network to Collaborate on Diagnosis and Treatment of Rare Diseases" in 2019, connecting 324 hospitals to enhance cooperation across healthcare tiers.
  • The network's strategy includes six key programs aimed at establishing collaboration mechanisms, implementing care standards, enhancing quality control, ensuring drug availability, setting up a registry, and promoting clinical research to effectively address rare diseases.

Article 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: ) to establish a mechanism for collaboration, ) to implement standards of care, ) to enhance quality control, ) to ensure the supply of drugs, ) to set up a registry, and ) 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.

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Source
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6409119PMC
http://dx.doi.org/10.5582/irdr.2019.01024DOI Listing

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