Establishment of New National Rare Disease (Nambyo) Registry and Registry Guidelines in Japan

摘要：

　　A New legal structure for rare disease (nambyo) has been established in Japan this year,after 42 years of measures of nambyo. We have been accumulating registry for nambyo from 2003, however, as it was based on paper registration, quality was not enough. Our new registry system will be based under ISO13606 which is a new medical international standard. Authorized doctors can put in data On Line by the new system, which has data cleaning filter for accurate data entry. Patients will be supported their medical expense by authorization by this system, so the registry will be efficient.

关键词： Rare Diseases Registries Demography

作者: Hiroshi Mizushima Mai Tanabe Yasutaka Sugamori Yoko Sato Hiromitsu Ogata

作者单位: National Institute of Public Health,Saitama,JAPAN

会议类型: 国际会议

会议名称: 第十六届世界医药健康信息学大会((MEDINFO2017)、第二届世界医药健康信息学华语论坛(WCHIS 2017)、第15届全国医药信息学大会(CMIA 2017)

会议地点: 苏州

会议语种:英文

页码: 536-538

在线出版日期: 2017-08-21（万方平台首次上网日期，不代表论文的发表时间）