Department of Health Department of Health PolicyPolicy

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

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A study of Information Offer, A study of Information Offer, Assessment, Management, and Assessment, Management, and Registration on Medical Aid Program Registration on Medical Aid Program for Chronic Pediatric Diseases of for Chronic Pediatric Diseases of Specified Categories (MAP)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.

The numbers of all registrants The numbers of all registrants of MAP in fiscal year 2000of MAP in fiscal year 2000

► Malignant tumor--- 20,026Malignant tumor--- 20,026► Chronic renal disease--- 9,600Chronic renal disease--- 9,600► Asthma--- 5,817Asthma--- 5,817► Chronic heart disease--- 12,049Chronic heart disease--- 12,049► Endocrine disease--- 30,583Endocrine disease--- 30,583► Collagen disease--- 3,194Collagen disease--- 3,194► Diabetes Mellitus--- 5,386Diabetes Mellitus--- 5,386► Inborn errors of metabolism--- 7,495Inborn errors of metabolism--- 7,495► Blood disease such as hemophilia--- 8,774Blood disease such as hemophilia--- 8,774► Neuromuscular disease--- 1,050 Neuromuscular disease--- 1,050 ► 10 subgroups including 488 diseases10 subgroups including 488 diseases► Total--- 113, 871Total--- 113, 871► Expenditure--- 8 billion yen=73 million US Expenditure--- 8 billion yen=73 million US

dollars ca. 640 USD per capitadollars ca. 640 USD per capita

Research Projects of DHP (1 to Research Projects of DHP (1 to 3)3)

1.1. A study of Information Offer, A study of Information Offer, Assessment, Management, and Assessment, Management, and Registration on Medical Aid Program Registration on Medical Aid Program (MAP) for Chronic Pediatric Diseases of (MAP) for Chronic Pediatric Diseases of Specified CategoriesSpecified Categories

2.2. A study on the Construction of A study on the Construction of Comprehensive Data Base about the Comprehensive Data Base about the Chronic Diseases of ChildrenChronic Diseases of Children

3.3. A study on the Future Trend of Neonatal A study on the Future Trend of Neonatal Mass-Screening and Continuous Mass-Screening and Continuous Improvements of the Current Screening Improvements of the Current Screening in Japan in Japan

A study of Information Offer, Assessment, A study of Information Offer, Assessment, Management, and Registration on Management, and Registration on Medical Aid Program for Chronic Medical Aid Program for Chronic Pediatric Diseases of Specified Pediatric Diseases of Specified Categories (MAP)Categories (MAP) ► A Study of Information Offer and System on A Study of Information Offer and System on

Medical Aid Program for Chronic Pediatric Medical Aid Program for Chronic Pediatric Diseases of Specified Categories (MAP)Diseases of Specified Categories (MAP)

► A study of Assessment and Registration on MAP A study of Assessment and Registration on MAP ► Drawing up the Material for Legislation of MAP Drawing up the Material for Legislation of MAP ► A Following-up Study of Presumptive Infants A Following-up Study of Presumptive Infants

with Specific Diseases Detected by Nationwide with Specific Diseases Detected by Nationwide Neonatal Mass-Screening in Japan Neonatal Mass-Screening in Japan

A study Assessment and Registration A study Assessment and Registration on Medical Aid Program for Chronic on Medical Aid Program for Chronic Pediatric Diseases of Specified Pediatric Diseases of Specified CategoriesCategories

The registered data of MAP in 1998 to The registered data of MAP in 1998 to 2003 years were gathered and analyzed 2003 years were gathered and analyzed epidemiologically and longitudinally. The epidemiologically and longitudinally. The numbers of data were 106,790 in 1998, numbers of data were 106,790 in 1998, 115,893 in 1999, 120,652 in 2000 115,893 in 1999, 120,652 in 2000 respectively from all regions in Japan, respectively from all regions in Japan, 116,685 from 86/87 regions in 2001, 116,685 from 86/87 regions in 2001, 112,021 from 86/89 in 2002, 69,093 from 112,021 from 86/89 in 2002, 69,093 from 44/95 in2003, and total 641,134 in 1998n to 44/95 in2003, and total 641,134 in 1998n to 2003 years.2003 years.

The Chronic Pediatric Diseases of Specified The Chronic Pediatric Diseases of Specified Categories and the numbers registered more Categories and the numbers registered more

than 2,000 patients in 2002 were as follows.than 2,000 patients in 2002 were as follows. ► short stature due to growth hormone deficiency: 11,804 patientsshort stature due to growth hormone deficiency: 11,804 patients► leukemia: 6,684 patientsleukemia: 6,684 patients► hypothyroidism: 5,979 patientshypothyroidism: 5,979 patients► bronchial asthma*: 5,608 patientsbronchial asthma*: 5,608 patients► type 1 diabetes: 3,708 patientstype 1 diabetes: 3,708 patients► brain tumor: 3,633 patientsbrain tumor: 3,633 patients► nephrotic syndrome*: 3,127 patientsnephrotic syndrome*: 3,127 patients► hyperthyroidism: 3,105 patientshyperthyroidism: 3,105 patients► neuroblastoma: 2,816 patientsneuroblastoma: 2,816 patients► Kawasaki disease*: 2,461 patientsKawasaki disease*: 2,461 patients► (3,924 persons including stenosis, dilatation, and aneurysm of (3,924 persons including stenosis, dilatation, and aneurysm of

coronary artery)coronary artery)► ventricular septal defect*: 2,345 patientsventricular septal defect*: 2,345 patients► vascular purpura: 2,259 patientsvascular purpura: 2,259 patients► precocious puberty: 2,145 patientsprecocious puberty: 2,145 patients► juvenile rheumatoid arthritis: 2,081 patientsjuvenile rheumatoid arthritis: 2,081 patients► biliary atresia: 2,019 patientsbiliary atresia: 2,019 patients

A study on the Construction of A study on the Construction of Comprehensive Data Base about Comprehensive Data Base about the Chronic Diseases of Childrenthe Chronic Diseases of Children

► A study on the Construction of Comprehensive A study on the Construction of Comprehensive Database about Childhood Intractable Diseases Database about Childhood Intractable Diseases Based at National Center for Child Health and Based at National Center for Child Health and DevelopmentDevelopment

► A study on the Quality Assurance of Registration A study on the Quality Assurance of Registration System of Childhood Intractable DiseasesSystem of Childhood Intractable Diseases

► A study on Extended Research of Childhood A study on Extended Research of Childhood Intractable Diseases by Using the DatabaseIntractable Diseases by Using the Database

► A study on Ethical Issues on the Registration A study on Ethical Issues on the Registration System of Childhood Intractable DiseasesSystem of Childhood Intractable Diseases

► A study on Creating Network, which can Provide A study on Creating Network, which can Provide Current Medical Information of the Diseases to Current Medical Information of the Diseases to Patients and the Family MembersPatients and the Family Members

A study on the Future Trend of A study on the Future Trend of Neonatal Mass-Screening and Neonatal Mass-Screening and Continuous Improvements of the Continuous Improvements of the Current Screening in JapanCurrent Screening in Japan► A Nationwide Survey on Quality Assurance A Nationwide Survey on Quality Assurance

System in the Current Mass-Screening in System in the Current Mass-Screening in JapanJapan

► A Study on Outcomes of Long-term Follow-A Study on Outcomes of Long-term Follow-up of Patients with Metabolic Diseases and up of Patients with Metabolic Diseases and Congenital Hypothyroidism (CH)-Special Congenital Hypothyroidism (CH)-Special Reference to Issues Related Human RightsReference to Issues Related Human Rights

► A Survey on Nationwide Registration Rate A Survey on Nationwide Registration Rate of Patients with Chronic Diseases which of Patients with Chronic Diseases which can be Detected by a Pilot Neonatal can be Detected by a Pilot Neonatal Screening by Newly Developed TechnologyScreening by Newly Developed Technology

Quality Assurance Quality Assurance System to Manage System to Manage

Neonatal Screening in Neonatal Screening in JapanJapan

Main BodyMain Body ： ： Local Governments Local Governments Screening Laboratories : Screening Laboratories : Internal Quality Internal Quality ControlControl Local Liaison Council: Local Liaison Council: Officials, Specialists Officials, Specialists Academic Societies: Academic Societies: The Japanese Society for Mass The Japanese Society for Mass

Screening (JSMS), Association of Technical Staffs Screening (JSMS), Association of Technical Staffs The Quality Control Center for Mass The Quality Control Center for Mass ScreeningScreening in Japan: inter-laboratory quality controlin Japan: inter-laboratory quality control Quality Assurance System (Surveillance Center)Quality Assurance System (Surveillance Center)

National Center for Child Health and National Center for Child Health and DevelopmentDevelopment

(Department of Health Policy) (Department of Health Policy)