ASrid organized J-RARE steering committee.

Date: August 6, 2017
Venue: ASrid office (Bunkyo, Tokyo)

What is J-RARE?

• Operate the Patients’ Data Platform(J-RARE) and set up the ethical committee funded by MHLW
• J-RARE has led by PGs and integrated the daily information, natural history, and the part of clinical information
• J-RARE can be tagged with/among other registries
• J-RARE has 8 target diseases
• Several PGs have started their QOL survey using J-RARE

J-RARE website; https://j-rare.net/