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

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 mechanisms and network; and concerns over patient privacy protection.

Citation:
Liu P, Gong M, Li J, Baynam G, Zhu W, Zhu Y, et al. Innovation in Informatics to Improve Clinical Care and Drug Accessibility for Rare Diseases in China. Front Pharmacol. 2021;12.

Keywords:
Case reporting; cohort study; digital health; health informatics; patient registry;
rare diseases

Abstract:
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 mechanisms and network; and concerns over patient privacy protection.