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

机译：建立新的国家稀有疾病（NAMBYO）登记处和日本登记指南

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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.

机译：经过42年的Nambyo措施，今年在日本建立了新的罕见疾病（Nambyo）的新法律结构。我们从2003年累积了Nambyo的注册表，然而，由于它基于纸张登记，质量还不够。我们的新登记系统将基于ISO13606，这是一个新的医疗国际标准。授权医生可以通过新系统在线上放入数据，该系统具有数据清洁过滤器，可用于准确的数据输入。患者将通过该系统授权支持其医疗费用，因此注册处将是有效的。

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《MEDINFO》|2017年|xxxvi 676 p. :|共3页
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Hiroshi Mizushima; Mai Tanabe; Yasutaka Sugamori; Yoko Sato; Hiromitsu Ogata;
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中图分类医学与其他学科的关系;
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Establishment of New National Rare Disease (Nambyo) Registry and Registry Guidelines in Japan

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