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Pediatrics International (2013) 55, 541
doi: 10.1111/ped.12206
Editorial
A review series begins: How much do we know about intractable disease? In the modern era, many would assume that the etiology and management of most human diseases have been established owing to current advances in knowledge and sophisticated technology. In reality, however, there are still a substantial number of diseases for which we have little or no information with regard to cause and treatment. In 1972, the Ministry of Health, Labor and Welfare (MHLW) defined “nanbyou”, that is, intractable disease, as follows: (i) disease that has resulted from an unidentifiable cause, does not have a clearly established treatment, and is associated with a considerably high risk of disability; and (ii) chronic disease, which requires a significant amount of labor for patient care, causing a heavy burden on family members, both financially and mentally. The Japan Intractable Diseases Information Center of the MHLW started a research initiative and, until recently, more than 130 diseases (e.g. aplastic anemia, multiple sclerosis, and
© 2013 The Author Pediatrics International © 2013 Japan Pediatric Society
amyloidosis) have been extensively studied. The government subsidizes the patient expenses associated with diagnosis and treatment (http://www.nanbyou.or.jp/english/index.htm). In 2009, the disease category was extended to as many as 177, including many congenital or inherited conditions such as congenital biliary atresia, Marfan syndrome, and CINCA syndrome. I am convinced that most readers of the Journal have great interest in these disease categories and thus, we have assembled this review series to describe the current state of knowledge for a number of intractable diseases. No doubt, this rich body of literature, produced by experts in their respective fields, will serve as a leading source of information for both researchers and practitioners for many years to come. Atsushi Manabe, MD Editor-in-Chief
Pediatrics International (2013) 55, 541
doi: 10.1111/ped.12206
Editorial
A review series begins: How much do we know about intractable disease? In the modern era, many would assume that the etiology and management of most human diseases have been established owing to current advances in knowledge and sophisticated technology. In reality, however, there are still a substantial number of diseases for which we have little or no information with regard to cause and treatment. In 1972, the Ministry of Health, Labor and Welfare (MHLW) defined “nanbyou”, that is, intractable disease, as follows: (i) disease that has resulted from an unidentifiable cause, does not have a clearly established treatment, and is associated with a considerably high risk of disability; and (ii) chronic disease, which requires a significant amount of labor for patient care, causing a heavy burden on family members, both financially and mentally. The Japan Intractable Diseases Information Center of the MHLW started a research initiative and, until recently, more than 130 diseases (e.g. aplastic anemia, multiple sclerosis, and
© 2013 The Author Pediatrics International © 2013 Japan Pediatric Society
amyloidosis) have been extensively studied. The government subsidizes the patient expenses associated with diagnosis and treatment (http://www.nanbyou.or.jp/english/index.htm). In 2009, the disease category was extended to as many as 177, including many congenital or inherited conditions such as congenital biliary atresia, Marfan syndrome, and CINCA syndrome. I am convinced that most readers of the Journal have great interest in these disease categories and thus, we have assembled this review series to describe the current state of knowledge for a number of intractable diseases. No doubt, this rich body of literature, produced by experts in their respective fields, will serve as a leading source of information for both researchers and practitioners for many years to come. Atsushi Manabe, MD Editor-in-Chief
