National Birth Defect Registry Based on concept of alert - - PowerPoint PPT Presentation

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National Birth Defect Registry Based on concept of alert - - PowerPoint PPT Presentation

National Birth Defect Registry Based on concept of alert practitioner Identifies patterns of birth defects with the same or similar exposures Collects data on maternal/paternal pre- conceptual and prenatal exposures Cases


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SLIDE 1
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SLIDE 2

National Birth Defect Registry

  • Based on concept of “alert practitioner”
  • Identifies patterns of birth defects with the

same or similar exposures

  • Collects data on maternal/paternal pre-

conceptual and prenatal exposures

  • Cases dually identified by individual

symptoms and overall syndrome or category name

  • Designed to raise hypotheses
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SLIDE 3

Teratogens Identified by Alert Practitioners

  • Thalidomide
  • Rubella
  • Dilantin
  • DES
  • Alcohol
  • Methyl Mercury
  • Radiation
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SLIDE 4

Scientific Advisory Board

  • Peter Kahn, Ph.D.

Rutgers University

  • James Murphy, Ph.D.

University of Colorado

  • Theo Colborn, Ph.D.

World Wildlife Fund

  • Stuart Newman, Ph.D.

New York Medical College

  • Shanna Swan, Ph.D.

California Department of Health Services

  • Maureen Paul, M.D.

University of Massachusetts

  • Wayland Swain, Ph.D.

Eco Logic Company

  • Janette Sherman, M.D.

Wayne State University

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SLIDE 5

Registry Projects

  • Bendectin
  • Agent Orange
  • Gulf War
  • Community based
  • Dickson, TN - oral cleft cluster
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SLIDE 6

Gulf War Exposures

  • DEET
  • Permethrin
  • Pyridostigmine
  • Pentachlorophenol
  • Benzocaine sulfur
  • Aluminum phospide
  • Baygon
  • Boric Acid
  • Sevin
  • Amidinohydrazone
  • Diazinon
  • Dursban
  • Dichlorvos
  • Ficam
  • Carbaryl
  • Lindane
  • Malathion
  • Oil Well Fires
  • Leaded fuels
  • Depleted

Uranium

  • Solvents
  • Decontam agent
  • Malaria Pills
  • Campfires
  • Leishmaniasis
  • Chemical warfare

agents

  • CARC
  • Vaccinations
  • D-phenothrin
  • Allethrin
  • Paint
  • Others
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SLIDE 7

Disability Frequency

  • Resp. Infect.

117

  • Ear Infect.

92

  • Motor Delay

86

  • Colic as Baby

62

  • Speech

62

  • Allergies 57
  • Jaundice

56

  • Reflux

52

  • Heart Murmur

51

  • High Fevers

46

  • Ext. Ears

40

  • Asthma

38

  • Food Sens.

38

  • Eczema

35

  • VSD

35

  • Drug Reaction

34

  • Hypotonia

34

  • Seizures

33

  • Acne-like Rash

33

  • Thrush

32

  • Mood Swings

32

  • Pneumonia 29
  • Birth Mark

28

  • Stomach problems

28

  • Sleep disorder 26
  • Walks on tiptoes

26

  • Goldenhar

26

  • Up. Limb Reduction 25
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SLIDE 8

Male-Mediated Birth Defects

Evidence from Experimental and Epidemiological Studies

  • Toluene
  • Benzene
  • Lead/mercury
  • Trichloroethane
  • Solvents
  • Dyes
  • Cigarette smoke/alcohol
  • Drugs

Possible Outcomes

  • Congenital malformations
  • Spontaneous abortions
  • Low birth weight
  • Childhood cancers
  • Developmental,

neurobehavioral, neuroendocrine, neurochemical abnormalities

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SLIDE 9

2.44 1.46 1.21 0.99 0.5 1 1.5 2 2.5 3

Anencephaly Cortical Blindness

Gulf War Veteran Non-GW Veteran N=3137 GW VETERAN: 410 NON-GW VET: 2727 – CNS Comp Cases per 100

Birth Defect Research for Children, Inc.

National Birth Defect Registry – Children of GW Vets/ Non-GW Vets

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SLIDE 10

6.1 5.12 9.76 3.7 2.97 5.02

2 4 6 8 10 12

AB/Undeveloped Lung Intern Ears Ex Ear Defects

Gulf War Veteran Non-GW Veteran N=3137 GW VETERAN: 410 NON-GW VET: 2727 – Lung/Ear Comp Cases per 100

Birth Defect Research for Children, Inc.

National Birth Defect Registry – Children of GW Vets/ Non-GW Vets

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SLIDE 11

1.95 1.95 8.54 6.1 0.95 0.92 4.03 3.04

1 2 3 4 5 6 7 8 9

Trans Gr Vessels Tetra of Fallot VSD ASD

Gulf War Veteran Non-GW Veteran N=3137 GW VETERAN: 410 NON-GW VET: 2727 – Heart Defects Comp Cases per 100

Birth Defect Research for Children, Inc.

National Birth Defect Registry – Children of GW Vets/ Non-GW Vets

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SLIDE 12

0.73 3.41 0.73 2.44 0.15 1.5 0.37 1.14

0.5 1 1.5 2 2.5 3 3.5 4

Endo Cushion Def Pulm Valve Sten Tricus Valve Sten Cardiomegaly

Gulf War Veteran Non-GW Veteran N=3137 GW VETERAN: 410 NON-GW VET: 2727 – Heart Defects Comp Cases per 100

Birth Defect Research for Children, Inc.

National Birth Defect Registry – Children of GW Vets/ Non-GW Vets

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SLIDE 13

2.44 3.41 3.17 2.2 0.81 2.05 0.99 0.62

0.5 1 1.5 2 2.5 3 3.5 4

Hypo Left Heart Patent Ductus Coart Aorta Pulm Atresia

Gulf War Veteran Non-GW Veteran N=3137 GW VETERAN: 410 NON-GW VET: 2727 – Heart Defects Comp Cases per 100

Birth Defect Research for Children, Inc.

National Birth Defect Registry – Children of GW Vets/ Non-GW Vets

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SLIDE 14

1.46 6.59 0.73 0.7 2.71 0.11

1 2 3 4 5 6 7

Trisomy Goldenhar Turners

Gulf War Veteran Non-GW Veteran N=3137 GW VETERAN: 410 NON-GW VET: 2727 – Syndromes Comp Cases per 100

Birth Defect Research for Children, Inc.

National Birth Defect Registry – Children of GW Vets/ Non-GW Vets

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SLIDE 15

0.49 0.24 0.49 0.29 0.07 0.11

0.1 0.2 0.3 0.4 0.5 0.6

TAR Cri Du Chat DiGeorge

Gulf War Veteran Non-GW Veteran N=3137 GW VETERAN: 410 NON-GW VET: 2727 – Syndromes Comp Cases per 100

Birth Defect Research for Children, Inc.

National Birth Defect Registry – Children of GW Vets/ Non-GW Vets

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SLIDE 16

28.78 22.44 4.39 7.8 11.22 7.74 3.08 2.68 19.51 24.46

5 10 15 20 25 30 35

Up Res Infect Ear Infections Immune Def Thrush Unexplained Fevers

Gulf War Veteran Non-GW Veteran N=3137 GW VETERAN: 410 NON-GW VET: 2727 – Immune Comp Cases per 100

Birth Defect Research for Children, Inc.

National Birth Defect Registry – Children of GW Vets/ Non-GW Vets

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SLIDE 17

Goldenhar Syndrome

  • Incidence ranges from 1/14,699 to 1/45,000 births
  • Associated with teratogens
  • Thalidomide
  • Primidone
  • Accutane
  • Some cases familial
  • Others “phenocopies”
  • Aranetta study found tripling of Goldenhar in GW

children born in military hospitals

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SLIDE 18

Goldenhar Case Study

  • 24 Goldenhar – fathers deployed
  • 7 Goldenhar critera fathers deployed
  • 2 Goldenhar fathers in Gulf after war
  • 33 Goldenhar associated with Gulf service
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SLIDE 19

Goldenhar Case Study

7 Goldenhar fathers non-deployed

23344 Steel worker 22970 Shots/solvents 26815 Cont gear 26896 Shots/Naptha 30868 Shots/lead fuel 45947 mechanic 48695 Cont gear

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SLIDE 20

Goldenhar Case Rates

  • 16 D Goldenhar DOB prior 10/1/93
  • 3 ND Goldenhar DOB prior 10/1/93
  • 56,782 births to deployed vets*
  • 68,908 births to non-deployed vets*

Crude rates for Goldenhar: Deployed – 28 per 100,000 Non-deployed – 4 per 100,000 *Araneta, Teratology, 1997.

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SLIDE 21

Goldenhar Details

  • Medical records confirmation 14/19
  • 9/16 healthy children before GW
  • 2/16 healthy children after birth of child with

Goldenhar Syndrome

  • 16/16 Goldenhar first born after GW
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SLIDE 22

Goldenhar Case Study

DOB Distribution

2 4 6 8 10 12 1991 1992 1993 1994 1995 1996 1997 1998 1999 2001 Goldenhar cases

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SLIDE 23

All GW Birth Defects

DOB Distribution

20 40 60 80 100 120 1990 1992 1994 1996 1998 2000 2003 All BDs

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SLIDE 24

Pubished Studies

  • 1997 Teratology – Aranetta - tripling of Goldenhar Syndrome in

GWV infants born in military hospitals

  • 2001 Ann of Epidemiology – Kang – increased reporting of birth

defects significantly associated with military service in the Gulf War

  • 2003 Birth Defects Research – Aranetta – higher prevalence of

tricuspid valve insufficiency, aortic valve stenosis and renal agenesis in infants conceived postwar by GWV fathers; hypospadias in boys born to GWV mothers

  • 2004 Internat. J. of Epidemiology – Doyle – increased risk of

miscarriage, malformations of genital system, urinary system, digestive system, musculo-skeletal system and non-chromosome anomalies in children of GWV fathers

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SLIDE 25

National Birth Defect Registry

Now available on-line 24 hours a day…..

www.birthdefects.org

sponsored by Birth Defect Research for Children