Innovation in Informatics to Improve Clinical Care and Drug Accessibility for Rare Diseases in China

• Main Authors: Peng Liu (Author), Mengchun Gong (Author), Jie Li (Author), Gareth Baynam (Author), Weiguo Zhu (Author), Yicheng Zhu (Author), Limeng Chen (Author), Weihong Gu (Author), Shuyang Zhang (Author)
• Format: Book
• Published: Frontiers Media S.A., 2021-10-01T00:00:00Z.
• Subjects: article
• Online Access: Connect to this object online.

Background: In China, there are severe unmet medical needs of people living with rare diseases. Relatedly, there is a dearth of data to inform rare diseases policy. This is historically partially due to the lack of informatics infrastructure, including standards and terminology, data sharing mechani...