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/