National platform for Rare Diseases Data Registry of Japan

• DOI: 10.1002/lrh2.10080
• Publication Date: 2019-01-31T09:49:56Z
• Authors: Yoshihiko Furusawa; Izumi Yamaguchi; Naoko Yagishita; Kazumasa Tanzawa; Fumihiko Matsuda; Yoshihisa Yamano
• Keywords: Data Sharing; Christian ministry

In Japan, there are approximately 300 projects conducting research on rare diseases supported by the Ministry of Health, Labour and Welfare Japan (MHLW) Agency for Medical Research Development (AMED). Diverse data, including clinical, genomic, sample-related generated these projects. However, at present, such data managed individually each project. This makes it difficult third parties to ascertain projects.Again this background, beginning 2017, AMED started National Platform Rare Diseases Data Registry (RADDAR-J), whose mission is construct a cross-sectional integration platform incorporating MHLW. RADDAR-J promotes sharing in accordance with data-sharing policy established AMED, which classifies into three categories based strategies used protect rights researchers while promoting sharing. integrates analyzes shared project add value resources promote secondary use protecting who their data. The designed provide incentives that supporting registry construction or genomic analysis also has function identification securely integrate originating from same person. accelerates clinical encouraging utilize central ethics committee.The expected lead streamlined collection, improved quality assurance, access promotion joint These benefits will accelerate diagnosis treatment technologies hopefully life patients diseases.