Birth Defects Surveillance, Research, and Prevention: Using the Data

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Birth Defects Surveillance, Research, and
Prevention Using the Data
Paula W. Yoon, ScD, MPH
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Public Health Importance of Birth Defects

• 3 - 4 of all births have a major malformation
• Leading cause of infant mortality
• Some causes entirely preventable

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CDCs Role in Preventing Birth Defects

• prevalence rates
• registry of cases for study or referral
• monitor prevention

Surveillance Systems

• risk factors
• protective factors
• public concerns

Epidemiological Studies

• prevention strategies
• public policy
• education

Prevention Programs
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Using the Data National and Local Activities

• Surveillance Epidemiology Prevention

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Surveillance Activities at the National Level

• Metropolitan Atlanta Congenital Defects
  Program - 5 counties, 40,000 births per year -
  active case ascertainment from multiple sources
• Data is used for - case-control and
  descriptive studies - cluster investigations -
  monitoring rates of birth defects

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Surveillance Activities at the National Level

• Surveillance using hospital discharge data -
  Birth Defects Monitoring Program (1974 - 1994)
  - Health Care Utilization Project (1990 - )
• Data is used for - monitoring national
  rates - special studies

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Surveillance Activities with States

• Promote state-level birth defects
  surveillance
• Develop surveillance standards and guidelines
• Compile and share surveillance data

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Current State Activities in Birth Defects
Surveillance
Operational
Planning/ Newly Implemented
Jan 1999
Other
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Organizational Location of State Birth Defects
Surveillance Programs
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New Cooperative Agreements for Birth Defects
Activities
No Registry
New or Partial Registry
Established Registry
Maine Montana Nevada New Hampshire
Florida Kentucky Missouri New Mexico North
Carolina South Carolina Utah
Arkansas Colorado Hawaii Iowa Michigan New
York Oklahoma
Jan 1999
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National Birth Defect Prevention Network
1. Improve quality of surveillance data 2.
Promote scientific collaboration 3. Provide
technical assistance for data collection 4.
Facilitate the dissemination of information 5.
Compile and make available state surveillance
data 6. Use birth defect data for health
services planning
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Data for 1998 NBDPN Annual Report
- 29 states - covers birth population of
2,251,825 - approximately 58 of annual U.S.
births
Jan 1999
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NBDPN Committees

• Newsletter/Communications
• Education and Outreach
• NTD Surveillance and Folic Acid Education
• Membership and By-Laws
• Data and Annual Report
• Annual Workshop
• Surveillance Guidelines and Standards

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Using the Data National and Local Activities

• Surveillance
• Epidemiology Prevention

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Birth Defect Research at the National Level

• Past Studies - Vietnam service and major
  birth defects - smoking and oral clefts -
  evaluation of birth certificate data
• Ongoing studies - Birth Defect Risk Factor
  Study - surveillance to detect new teratogens -
  endocrine disrupters and genital defects

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Research Activities with States

• Analyses of surveillance data - Down
  Syndrome - Impact of prenatal diagnoses
• Case-control studies - Chorionic Villus
  Sampling - Drinking water
• Cluster investigations

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Centers for Birth Defects Research and Prevention
Arkansas California Georgia Iowa
Massachusetts New Jersey New York Texas
Jan 1999
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National Birth Defect Prevention Study

• PURPOSE
• Evaluate factors associated with birth
  defects - risk factors
• - preventative factors
• Test hypotheses regarding etiology -
  teratogens
• - gene-environment interaction
• - gene-gene interaction

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National Birth Defect Prevention Study

• 30 major birth defects
• Clinical review of all cases
• Maternal interview - pregnancy, family and
  medical histories, occupational exposures,
  and lifestyle.
• Cheek swabs for DNA studies.
• Pooled database of 16,000 interviews over 5
  years.

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National Birth Defect Prevention Study
Data Collection (CATI Configuration)
Battelle
CDC
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Using the Data National and Local Activities

• Surveillance Epidemiology
• Prevention

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Prevention Activities at the National Level

• National Folic Acid Campaign - National
  Council on Folic Acid - health communications
  research - resource guide for community
  programs - public service announcements

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Prevention Activities at the National Level

• Public policy and information sharing -
  Thalidomide
• - recommendation on CVS
• - US Public Health Service recommendations
• - folic acid fortification

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Prevention Activities with States

• Technical assistance and grants
• Development of prevention programs
• Assessment of prevention effectiveness -
  surveys BRFSS, MOD GA Womens Health -
  biological marker surveys - monitoring NTD rates