Department of Health Policy

1. Department of Health Policy The Department of Health Policy has the following missions in regard to maternal and child health and to child development. By cooperating with nationwide institutions related to them, the department gathers information to relate to maternal/child medical and health care and analyzes it. The department picks appropriate information from the analyzed results and discloses the information. We propose ideal measures about maternal/child medical and health care for the Ministry of Health, Labour and Welfare.

2. Providing Evidences Nationwide Survey Electric Data of Medical Aid Program Research Reports Department of Health Policy http://www.nch.go.jp/ policy/index.htm Textbooks Manuals Medical Articles Institutions Related to Maternal and Child Health Care Ministry of Health, Labour, and Welfare Society Mass Media

3. A study of Information Offer, Assessment, Management, and Registration on Medical Aid Program for Chronic Pediatric Diseases of Specified Categories (MAP) Medical Aid Program for Chronic Pediatric Diseases of Specified Categories (MAP) was unified on a nationwide scale in1998 to select the objective patient by the medical record which clarifies the standard diagnosis. The electric data from the records in whole Japan have been gathered, analyzed, and opened by considering the protection of privacy. The data do not include the name, the address, and the telephone number of patient etc. and are consented to use as the research material in MAP by parent/guardian.

4. The numbers of all registrants of MAP in fiscal year 2000 • Malignant tumor--- 20,026 • Chronic renal disease--- 9,600 • Asthma--- 5,817 • Chronic heart disease--- 12,049 • Endocrine disease--- 30,583 • Collagen disease--- 3,194 • Diabetes Mellitus--- 5,386 • Inborn errors of metabolism--- 7,495 • Blood disease such as hemophilia--- 8,774 • Neuromuscular disease--- 1,050 • 10 subgroups including 488 diseases • Total--- 113, 871 • Expenditure--- 8 billion yen=73 million US dollars ca. 640 USD per capita

5. Research Projects of DHP (1 to 3) • A study of Information Offer, Assessment, Management, and Registration on Medical Aid Program (MAP) for Chronic Pediatric Diseases of Specified Categories • A study on the Construction of Comprehensive Data Base about the Chronic Diseases of Children • A study on the Future Trend of Neonatal Mass-Screening and Continuous Improvements of the Current Screening in Japan

6. A study of Information Offer, Assessment, Management, and Registration on Medical Aid Program for Chronic Pediatric Diseases of Specified Categories (MAP) • A Study of Information Offer and System on Medical Aid Program for Chronic Pediatric Diseases of Specified Categories (MAP) • A study of Assessment and Registration on MAP • Drawing up the Material for Legislation of MAP • A Following-up Study of Presumptive Infants with Specific Diseases Detected by Nationwide Neonatal Mass-Screening in Japan

7. A study Assessment and Registration on Medical Aid Program for Chronic Pediatric Diseases of Specified Categories The registered data of MAP in 1998 to 2003 years were gathered and analyzed epidemiologically and longitudinally. The numbers of data were 106,790 in 1998, 115,893 in 1999, 120,652 in 2000 respectively from all regions in Japan, 116,685 from 86/87 regions in 2001, 112,021 from 86/89 in 2002, 69,093 from 44/95 in2003, and total 641,134 in 1998n to 2003 years.

8. The Chronic Pediatric Diseases of Specified Categories and the numbers registered more than 2,000 patients in 2002 were as follows. • short stature due to growth hormone deficiency: 11,804 patients • leukemia: 6,684 patients • hypothyroidism: 5,979 patients • bronchial asthma*: 5,608 patients • type 1 diabetes: 3,708 patients • brain tumor: 3,633 patients • nephrotic syndrome*: 3,127 patients • hyperthyroidism: 3,105 patients • neuroblastoma: 2,816 patients • Kawasaki disease*: 2,461 patients • (3,924 persons including stenosis, dilatation, and aneurysm of coronary artery) • ventricular septal defect*: 2,345 patients • vascular purpura: 2,259 patients • precocious puberty: 2,145 patients • juvenile rheumatoid arthritis: 2,081 patients • biliary atresia: 2,019 patients

9. A study on the Construction of Comprehensive Data Base about the Chronic Diseases of Children • A study on the Construction of Comprehensive Database about Childhood Intractable Diseases Based at National Center for Child Health and Development • A study on the Quality Assurance of Registration System of Childhood Intractable Diseases • A study on Extended Research of Childhood Intractable Diseases by Using the Database • A study on Ethical Issues on the Registration System of Childhood Intractable Diseases • A study on Creating Network, which can Provide Current Medical Information of the Diseases to Patients and the Family Members

10. A study on the Future Trend of Neonatal Mass-Screening and Continuous Improvements of the Current Screening in Japan • A Nationwide Survey on Quality Assurance System in the Current Mass-Screening in Japan • A Study on Outcomes of Long-term Follow-up of Patients with Metabolic Diseases and Congenital Hypothyroidism (CH)-Special Reference to Issues Related Human Rights • A Survey on Nationwide Registration Rate of Patients with Chronic Diseases which can be Detected by a Pilot Neonatal Screening by Newly Developed Technology

11. Quality Assurance System to Manage Neonatal Screening in Japan Main Body： Local Governments Screening Laboratories : Internal Quality Control Local Liaison Council: Officials, Specialists Academic Societies: The Japanese Society for Mass Screening (JSMS), Association of Technical Staffs The Quality Control Center for Mass Screening in Japan: inter-laboratory quality control Quality Assurance System (Surveillance Center) National Center for Child Health and Development (Department of Health Policy)