Art

J-GLOBAL ID：201702242398289769   Reference number：17A0254235

National Registry of Designated Intractable Diseases in Japan: Present Status and Future Prospects

日本における指定難病の国家登録: 現状および将来性

Author (6)： KANATANI Yasuhiro (Department of Health Crisis Management, National Institute of Public Health) ,  TOMITA Naoko (Department of International Health and Collaboration, National Institute of Public Health) ,  SATO Yoko (Center for Public Health Informatics, National Institute of Public Health) ,  ETO Akiko (Department of Health Crisis Management, National Institute of Public Health) ,  OMOE Hiroe (Department of Research Promotion, Japan Agency for Medical Research and Development) ,  MIZUSHIMA Hiroshi (Center for Public Health Informatics, National Institute of Public Health)
Material： Neurologia Medico-Chirurgica  (神経外科)
Volume： 57  Issue： 1  Page： 1-7(J-STAGE)  Publication year： 2017 
JST Material Number： Z0762A  ISSN： 0470-8105  Document type： Article
Article type： 解説  Country of issue： Japan (JPN)  Language： ENGLISH (EN)

Thesaurus term： *disease ,...
Semi thesaurus term： *Intractable disease ,...

Register(free) or Log In to access     To see more with JDream III (charged).   {{ this.onShowAbsJLink("http://jdream3.com/lp/jglobal/index.html?docNo=17A0254235&from=J-GLOBAL&jstjournalNo=Z0762A") }}

Author keywords (3)： intractable diseases ,  registry ,  clinical research

JST classification (2)： Medicine in general  (GA01010Y) ,  Medical information processing  (JE15030Q)

Reference (15)：

• 1) Forman J, Taruscio D, Llera VA, Barrera LA, Coté TR, Edfjäll C, Gavhed D, Haffner ME, Nishimura Y, Posada M, Tambuyzer E, Groft SC, Henter JI: International Conference for Rare Diseases and Orphan Drugs (ICORD): The need for worldwide policy and action plans for rare diseases. Acta Paediatr 101: 805-807, 2012
• 2) Hayashi S, Umeda T: 35 years of Japanese policy on rare diseases. Lancet 372: 889-890, 2008
• 3) Gliklich RE, Dreyer NA, Leavy MB (eds): Registries for Evaluating Patient Outcomes: A User’s Guide [Internet]. 3rd edition. Rockville (MD): Agency for Healthcare Research and Quality (US); 2014 Apr.
• 4) Svenstrup D, Jørgensen HL, Winther O: Rare disease diagnosis: A review of web search, social media and large-scale data-mining approaches. Rare Dis 16: e1083145, 2015
• 5) Egashira Y, Matsuyama H: Subacute myelo-optico-neuropathy (SMON) in Japan. With special reference to the autopsy cases. Acta Pathol Jpn 32 Suppl 1: 101-116, 1982

Terms in the title (5)： 日本 ,  指定難病 ,  国家 ,  現状 ,  将来