Japan: Elaboration of a data integration platform for rare disease research

Stemming from the need to collect and integrate data on rare disease, the Japan Agency for Medical Research and Development is conducting a project to establish a standard data integration platform for rare disease research. A recent article published in Studies in Health Technology and Informatics presents the background, purpose, process, results, current status, and future plans of the project. Overall, the project aims to develop an information infrastructure and a supporting organisation in order to create rare disease registries and and enhance the sharing of patient data.

Stud Health Technol Inform. 2019 Aug 21;264:1080-1083.