National Registry of Designated Intractable Diseases in Japan: Present Status and Future Prospects.
National Registry of Designated Intractable Diseases in Japan: Present Status and Future Prospects.
复制标题
日本国家指定难治性疾病登记处：现状和未来前景。
DOI：
10.2176/nmc.st.2016-0135
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发表时间：
2017-01-15
影响因子：
1.9
通讯作者：
Mizushima H
中科院分区：
文献类型：
--
作者：
Kanatani Y;Tomita N;Sato Y;Eto A;Omoe H;Mizushima H
日本促进与难治性疾病有关的研究，并为这些疾病的患者提供财政支助。难治性疾病是指符合以下标准的疾病：（1）罕见（影响不到日本人口的0.1%），（2）病因不明，（3）缺乏有效治疗，（4）需要长期治疗，（5）存在客观诊断标准，不一定等同于其他国家的罕见病。需要建立一个国家数据库，以促进研究，阐明这些疾病的发病机制，并开发药品和医疗设备。厚生劳动省于2001年启动了网上登记系统，但在收集和利用疑难杂症患者信息方面仍然存在许多问题。在本文中，我们描述了日本指定的疑难杂症的国家登记的现状，并讨论了未来的前景。
Japan promotes research related to intractable diseases and financially supports patients with these diseases. Intractable diseases are designated as those that fulfill the following criteria: (1) rarity (affecting less than 0.1% of the population in Japan), (2) unknown etiology, (3) lack of effective treatment, (4) necessity of long-term treatment, and (5) existence of objective diagnostic criteria and not necessarily equal to rare diseases in other countries. The construction of a national database is required to promote research to clarify the pathogenesis of these diseases and to develop pharmaceutical products and medical devices. The Ministry of Health, Labor, and Welfare launched an online registration system in 2001, but many problems associated with gathering and utilizing information on patients with intractable diseases remain. In this paper, we describe the present status of the national registry of designated intractable diseases in Japan and discuss future prospects.