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Intractable Disease Platform

【Research Title】Research on data integration and promotion of utilization through constructing a comprehensive information infrastructure for an intractable disease registry.

【Research Outline】This study aims to establish a national registry covering many intractable diseases and a support system. We aim to develop a support system that will enable each research group to maximize their results by reducing the burden on each research group to establish the registry and allowing them to concentrate on utilizing the data. In addition, by linking the information from each registry with other news, we aim to increase the complete coverage of each disease and build an information infrastructure that will dramatically improve the overall picture of intractable diseases and elucidate their pathological conditions. This research aims to promote the development of research on intractable diseases through the secondary use of the information on intractable diseases thus consolidated.

【Related Sites】

Intractable Disease Platform – Rare Disease Data Registry of Japan

【Related Papers】

Furusawa Y, Yamaguchi I, et al. National platform for Rare Diseases Data Registry of Japan. Learn Health Systems. 2019; e10080.

Yamaguchi I, Furusawa Y, Kawaguchi T, et al. Establishment of a Comprehensive Information Infrastructure and a Support Organization for Rare Disease Research in Japan (RADDAR-J). Stud Health Technol Inform. 2019 Aug 21; 264: 1080-1083.