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2010JICAtraining course (2010.12.16) at SCIPH1
JICA: Support for the Establishment of a Neonatal Screening System forMiddle East Region, FY2010
(2010.12.16) Sapporo City Institute of Public Health
Neonatal Screening Program- Establishment, Evaluation, and Follow-up Survey -
Additional Slides
HARADA Shohei, M.D., Ph.D.
Head of the Division of Clinical Practice Policy,
Department of Health Policy,
National Research Institute for Child Health and Development
Neonatal Screening Research and Development Center of
Japan Public Health Association (JPHA)
2008JICAtraining course (2008.12.8) at SCIPH2 3
•Millennium Development Goals (MDGs)•Goal 1: Eradicate extreme poverty and hunger•Goal 2: Achieve universal primary education•Goal 3: Promote gender equality and empower women•Goal 4: Reduce child mortality rate
•Target 4A: Reduce by two-thirds, between 1990 and 2015,the under-five mortality rate
•Goal 5: Improve maternal health•Goal 6: Combat HIV/AIDS, malaria, and other diseases•Goal 7: Ensure environmental sustainability•Goal 8: Develop a global partnership for development
• MDG 1 - hunger and poverty• Malnutrition
• Child labor
• MDG 4 - reduce child mortality• MDG 5 - improve maternal health
• MDG 6 - combat disease• MDG 7 - environmental sustainability
• Deforestation
• Runoff fertilizer water pollution
Tobacco and MDGs
Meeting on a Training Network on Child and Adolescent Health and TobaccoControl in the Western Pacific9-10 December 2010
5 |
Overview on tobacco control:Overview on tobacco control:Implications for child and adolescent healthImplications for child and adolescent health
Overview on tobacco control:Overview on tobacco control:Implications for child and adolescent healthImplications for child and adolescent health
Dr Susan MercadoDr Susan MercadoTeam LeaderTeam Leader
Tobacco Free InitiativeTobacco Free InitiativeWorld Health OrganizationWorld Health Organization
Western Pacific Regional OfficeWestern Pacific Regional Office
6
Meeting on a Training Network on Child and Adolescent Health and TobaccoControl in the Western Pacific9-10 December 2010
7 |Meeting on a Training Network on Child and Adolescent Health and TobaccoControl in the Western Pacific9-10 December 2010
8 |
2 peopledie each minute from atobacco-related diseasein the Region.
Meeting on a Training Network on Child and Adolescent Health and TobaccoControl in the Western Pacific9-10 December 2010
9 |
Number of smokers in
the Western Pacific:
430 million
2
Meeting on a Training Network on Child and Adolescent Health and TobaccoControl in the Western Pacific9-10 December 2010
10 |
Tobacco use is a
paediatric disease.
80-90% of smokers initiate
use before the age of 18.
Meeting on a Training Network on Child and Adolescent Health and TobaccoControl in the Western Pacific9-10 December 2010
11 |
4,000 chemicals, 60 known carcinogens
Meeting on a Training Network on Child and Adolescent Health and TobaccoControl in the Western Pacific9-10 December 2010
12 |
13.8%youth 13-15 yearscurrently smokecigarettes in the
Region
Meeting on a Training Network on Child and Adolescent Health and TobaccoControl in the Western Pacific9-10 December 2010
13 |
64%youth 13-15 years
exposed to secondhand smoke inpublic places
Meeting on a Training Network on Child and Adolescent Health and TobaccoControl in the Western Pacific9-10 December 2010
14 |
50%youth 13-15 years
old are exposed tosecond hand
smoke at home.
Social
StrategiesScientific
Knowledge
Political
Will
Professor Seiji Yamaguchi, M.D., Ph.D.Department of Pediatrics, Shimane UniversityThe president of Japanese Society for Mass-Screening
NewbornScreening
ImmunizationInfant HealthCheck System
Child Health
Governmental Policies
The concept proposed by Professor Yamaguchi, who is the chair of the research project team
NewbornScreening
ImmunizationInfant HealthCheck System
Child Health
Governmental Policies
TobaccoControl
The concept modified by Dr. Harada
3
2008JICAtraining course (2008.12.8) at SCIPH19 20
The closing ceremony of 7th APRM of ISNS at Bali, Indonesia, Oct. 201021
The closing ceremony of 7th APRM of ISNS at Bali, Indonesia, Oct. 2010
Dr. Fukushi
Dr. Hannon
Dr. Aman B. PulunganChairman of the Meeting
Dr. Pass
Dr. Therrell
Dr. Padilla
Dr. Torresani
2010JICAtraining course (2010.12.16) at SCIPH22 23
Dr. Carmencita D. Padilla, Director, Newborn Screening Reference Center,National Institute of Health, University of the Philippines ManilaMembers of Newborn Screening Center of the Philippines
24
7th ASIA-PACIFIC REGIONAL MEETINGof the International Society of Neonatal Screening (ISNS)
3-5 October 2010 Discovery Kartika Plaza, Kuta Bali, Indonesia
Country ReportFrom Japan
Shohei HARADA, MD, PhDDepartment of Health Policy,
National Center for Child Health and Development,Tokyo JAPAN
Neonatal Screening Research and DevelopmentCenter, Japan Public Health Association
Name of country: JapanSize of country: 377,914 km²Population: 127,288,419Annual number of newborns:1,081,383 (2008)
Research Institute Medical Center
National Center for Child Healthand Development, Tokyo JAPAN
4
S. Harada (2009.7.10) 検査技術者研修会
1980 1990 2000 2010
Sapporo
JAPAN
Hokkaido
City Town MHLWPTCity ?
Hokkaido
PediatricianScreeningLaboratory Pediatrician LTFU
QA
Today’s Take Home Message
Metabolic
(End
ocrine)A
bnormality
TypicalClassical Atypical
PartialTransient Non
disease
How to define a condition ?
Cut off 1 Cut off 2 Cut off 3
False positive rate
(Modified Dr. Loboer’s PLENARY 6)30
Structure (Standard ) of Screening in Japan
Notificationof results
Prefectural and city governments/
government designated cities
Implementation guideline for testsof congenital metabolism
abnormality, etc.
Laboratory for screening
Pregnant women,families
Medical institutionfor detailed tests
Enlightening and publicizing of thenecessity of receiving tests throughmaternal and child healthhandbook and mothers’ classes
Requestfor tests
Liaison council forscreening
Consultantphysician
Filter paperblood
Medical institutionfor blood sampling
Request fordetailed tests
Informationsupply
Publicizing thescreening system
S.Harada (2008.11.12)富山県民会館
Neonatal screening in Japan
Disease Analytes Treatment IncidencePhenylketonuria
(PKU)
Phenylalanine Low-Phe Diet 1:93,345
Maple Syrup Urine
Disease (MSUD)
Leucine Diet 1:670,702
Homocystinuria Methionine VitB6, Diet 1:796,161
Galactosemia Enzyme activity
Galactose
Diet Type 1
1:934,192
Congenital
Hypothyroidism
TSH (all labs)
free T4 (few labs)
Thyroid hormone
replacement
1:3,000~3,500
Congenital adrenal
Hyperplasia (CAH)
17-hydroxy-pro-gesterone(17-OHP)
Cortisol
florinef
1:15,800
S.Harada (2008.10.25)MS基礎研修会
Wilson JMG, Jungner G. Principles and Practice ofScreening for Disease. WHO Chronicle 1968;22(11):473.
1.The condition sought should be an important health problem.
2.There must be an accepted and effective treatment for patients with thedisease, that must be more effective at preventing morbidity when initiated inthe early, asymptomatic stage than when begun in the later, symptomatic stages.
3.Facilities for diagnosis and treatment should be available.
4.There must be an appropriate, acceptable, and reasonably accuratescreening test.
5.The natural history of the condition, including development from latent tomanifest disease, should be adequately understood.
6.The cost of case-finding (including diagnosis and treatment of patientsdiagnosed) should be economically balanced in relation to possible expenditureon medical care as a whole.
S. Harada (2009.7.10) 検査技術者研修会
Recent results of neonatal screeningfor IEMs in Japan
Year Annual birth Annual test % ReportedCases
1977-2002
34,862,172 33,313,090 95.6 4,221
(His 2,200)
2003 1,124,755 1,183,571 105.2 70
2004 1,099,477 1,161,382 105.6 71
2005 1,064,003 1,118,428 105.1 126
2006 1,091,323 1,150,337 105.4 92
2007 1,092,319 1,166,739 106.8 101
2008 1,081,383 1,163,190 107.6 125
Total 41,415,432 40,256,737 97.2 4,806
S. Harada (2009.7.10) 検査技術者研修会
Recent results of neonatal screeningfor congenital hypothyroidism in Japan
Year Annual birth Annual test % ReportedCases
1979-2002
34,862,172 29,985,830 95.4 7,869
2003 1,124,755 1,183,584 105.2 465
2004 1,099,477 1,157,350 105.3 590
2005 1,064,003 1,115,572 104.8 568
2006 1,091,323 1,151,470 105.5 577
2007 1,092,319 1,157,382 106.0 580
2008 1,081,383 1,154,185 106.7 606
Total 41,415,432 40,256,737 97.2 11,255S. Harada (2009.7.10) 検査技術者研修会
Incidence of CH in Japan(Statistics from the Ministry of Health, Labour, and Welfare)
0
1000
2000
3000
4000
5000
6000
7000
8000
1984 1985 1986 1987 1988 1989 1990 1991 1992 1993 1994 1995 1996 1997 1998 1999 2000 2001 2002 2003 2004
Incidence
1 in 5,700 in the early 1980s.
1 in 3,900 in 1989 and in 1990
S. Harada (2009.7.10) 検査技術者研修会
0 5000 10000 15000 20000 25000 30000 35000
1
4
7
10
13
16
19
22
25
28
31
34
37
40
43
46
49
52
55
58
61
Reported incidence of CH by each local governments (2007)(Statistics by the Ministry of Health, Labour and Welfareof Japan)
5
S. Harada (2009.7.10) 検査技術者研修会
Recent results of neonatal screeningfor congenital adrenal hyperplasia in Japan
Year Annual birth Annual test % ReportedCases
1988-2002
18,084,188 17,317,113 96.8 1,098
2003 1,124,755 1,183,571 105.2 57
2004 1,099,477 1,161,382 105.6 51
2005 1,064,003 1,118,428 105.1 64
2006 1,091,323 1,150,337 105.4 58
2007 1,092,319 1,166,739 106.8 76
2008 1,081,383 1,163,190 107.6 49
Total 41,415,432 40,256,737 97.2 1,453S. Harada (2009.7.10) 検査技術者研修会
Results of neonatal screening for congenitalhypothyroidism in Japan.
Presented at Hardelot, France in Sep.1993
Period No.ofscreened
No.ofCH
Incidence Methods
1979-1984 7,429,073 932 1:7,971 1984.8:RIA(87%),
EIA(13%)
1985-1987 4,128,218 675 1:6,116 1986.4:RIA(66.7%),
EIA(33.3%)
1988-1991 5,015,020 1,185 1:4,232 1988.10:RIA(44.5%),EIA(22.2%),
ELISA(33.3%)
1991.4:RIA(5.7%),ELISA(94.3%)
Total 16,572,311 2,792 1:5,936
0
10
20
30
40
50
60
1988 1992 1996 2000
Co-operation for LTFU by localgovernments(black:refusal)
S. Harada (2009.7.10) 検査技術者研修会
Recent results of neonatal screeningfor congenital hypothyroidism (CH) in Japan
Year Annual birth Missing
LTFU data
CH Incidence
1994 1,233,072 17.5% 505 1 in 2,442
1995 1,187,067 17.5% 514 1 in 2,309
1996 1,206,551 24.1% 416 1 in 2,903
1997 1,194,510 26.7% 544 1 in 2,197
1998 1,199,183 29.3% 782 1 in 1,534
1999 1,184,302 38.5% 536 1 in 2,208
Total 7,204,685 25.9% 3,266 1 in 2,206
Development of theneonatal screening forcongenital hypothyroidismin Japan
Jun 1978 to Oct 1979
to Apr 1980
to Oct 1980
Type of NBS:National screening programs,but operated by each localgovernments (47 prefecturesand 18 big cities)
S.Harada (2008.10.25)MS基礎研修会
Annual numbers of low birth weightinfants (by Professor Kusuda)
0
0.2
0.4
0.6
0.8
1.0
1.2
1.4
1.6
20001990 (year)0
2
4
6
8
10
12
14
16
LB
WI
(10,0
00_
rate
%)
Total birth
LBWI
Birth rate of LBWI
To
tal
bit
rth
(millio
n)
S. Harada (2009.7.10) 検査技術者研修会
Barriers to screening andcurrent approaches to overcoming
S. Harada (2009.7.10) 検査技術者研修会
002 2 35 10
21 15 11 17 7
5 4 20 6 12 6
6 6 26 4 8 3
0% 20% 40% 60% 80% 100%
2006
1994
1991
1981
Standardization of cutoff level of TSH in firstdried blood specimen on neonatal screening
for congenital hypothyroidism in Japan
None 80 50 40 30 30>
6
0% 20% 40% 60% 80% 100%
Female50_59
Female40_49
Female30_39
Female20_29
Male50_59
Male40_49
Male30_39
Male20_29
Have you ever known about implemenation ofnewborn screening in Japan?
IKnowAboutNBS Idon'tKnowAboutNBS
0% 20% 40% 60% 80% 100%
Female50_59
Female40_49
Female30_39
Female20_29
Delivery NoDelivery
Female>>>Male
Question:Do you know the nationwide neonatal screening in Japan?
Most of themDon’t Know
Mothers>>>>Non-pregnant women
A. ‘Personal data’ B. ‘Availability of consent’
C. ‘Progress in medicine’
Fig. 1 Fujii C. et al.
0 50 100 (%)
48.0
40.0
42.1
54.9
52.0
47.1
65.9
JSOG member
JSMmember
JPS member
NCCHD personnel
KUH medical staff
JPA member
Members of the public
28.6
20.0
14.9
17.6
49.0
50.3
14.7
0 50 100 (%)
JSOG member
JSMmember
JPS member
NCCHD personnel
KUH medical staff
JPA member
Members of the public
0 50 100 (%)
59.2
57.5
68.4
35.2
48.0
7.8
23.0
JSOG member
JSMmember
JPS member
NCCHD personnel
KUH medical staff
JPA member
Members of the public
S.Harada (2008.11.11)富山県医師会
Population statistics for current 100 years in Japanhttp://www1.mhlw.go.jp/toukei/kjd100_8/index.html#data
Cambodia 88 male 54.2
China 31 male 70.7
Infant mortality rates
Live birth rates
Daeth rates
S.Harada (2008.10.25)MS基礎研修会SAGE http://www.tokyo-eiken.go.jp/SAGE/yosoku-j/Japan/all_m.html
Spanish flue
Decrease of DeathsIncrease of Life expectancy
AgingLife-style disease
CancerEmerging diseaseAccident, Suicide
Total death numbers from 1900 to 2000 in Japan
MaleFemale
S.Harada (2008.10.25)MS基礎研修会
Agenda and future goals ofNeonatal screening in Japan
・Increasing numbers of LBWI・Iodine-containing disinfectants・Inappropriate long-term follow-up・storage and usage of residual dried blood spots・Introduction of MS/MS screening
S. Harada (2009.7.10) 検査技術者研修会
Long-term follow-up system forscreened positives in Japan
Localgovernment
ScreeningLaboratory
Obestetrician(Blood collection)
RefferedMedical center
Research Institute forChild Health and Development
1.money
4. report
2.collection
3.result
5.Request forMedical examination
6.result
7.refferal
・Initial data from SLs・Positives from LGs ・Secondary data from SLs
・Data from medical centers
Reporting・MHLW・Academic society・Task force・Web site
7
S.Harada (2009.12.01)国立環境研 S.Harada (2009.12.01)国立環境研
Dr. Bradford L. Therrell, who is the Director of the National Newborn Screening andGenetics Resource Center (USA).
Dr. W. Harry Hannon, who is the Emeritus Chief of Newborn Screening Branch at CDC.Dr. Kenneth Pass, who is the President of the ISNS.
Newborn Screening System- Six Parts-
Education Screening
Evaluation Follow-up
DiagnosisTreatment
Management
“ not just a laboratory screening test “ by Dr. H. Hannon
Continuous Quality Improvement(CQI)
• Periodic audits – Week link analysis
• “Missed cases” – Gaps in the system
• False positive rate – Refining cutoffs
By Dr. H Hannon (CDC, USA)
S.Harada (2009.12.01)国立環境研
8
Dr. Dianne Webster, who is the director of New ZealandNewborn Screening
S.Harada (2009.12.01)国立環境研
Barriers to screening
Pediatrician
Perception
Cost
Health benefits
KnowledgeAwareness
Acceptability
Test factors
Parental
S.Harada (2009.12.01)国立環境研
Ms Vernonica Wiley, Secretary-Treasurer of the ISNSNSW Newborn Screening Programme, Australia
The importance of registry in Newborn Screening(by Dr. Veronica Wiley)
• Survey the literature - determine assay
• Assay samples with proven disorder
• Assay samples in a pilot program
• Analyse results from pilot andretrospective samples
• Determine percentile for cut-offdepending on overlap of patient groups
Establish Cut-off Values
9
S.Harada (2009.12.01)国立環境研
S.Harada (2009.12.01)国立環境研 S.Harada (2009.12.01)国立環境研
Thank you for your attention!
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