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Public Health Birth Defects Surveillance. Diana Valencia MS, R.J Berry, MD, MPH. National Center on Birth Defects and Developmental Disabilities Centers for Disease Control and Prevention Atlanta, GA USA Antiretroviral Therapy (ART) in Pregnancy, Breastfeeding and Beyond - PowerPoint PPT Presentation
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Diana Valencia MS, R.J Berry, MD, MPH
National Center on Birth Defects and Developmental Disabilities
Centers for Disease Control and PreventionAtlanta, GA USA
Antiretroviral Therapy (ART) in Pregnancy, Breastfeeding and Beyond
Johannesburg, South Africa18-20 June, 2012
Public Health Birth Defects Surveillance
Public Health Birth Defects Surveillance
The ongoing and systematic collection,
analysis, and interpretation of health data
essential to the planning, implementation, and
evaluation of public health practice
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What Are Birth Defects?
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Abnormalities of structure or function, present at
birth with medical, social, or cosmetic
consequences (typically requiring intervention)
More than 4,000 birth defects are known
Mental or physical disabilities or death
Leading cause of death in children under 5 years of
age in many countries
~8 million babies are born/year worldwide with birth
defects
4Source: March of Dimes 2006
Planning for Birth Defects Surveillance
Defining a public health problem What are the real needs? What is the perceived need or purpose for surveillance?
Are there concerns about exposure to Efavirenz (EFV) ? What is the impact of Efavirenz therapy on neural tube defect
rates/birth defect rates? Who has a stake/interest in the solution or outcome?
Can surveillance help address the problem? How? Base-line data Serves as a sentinel system for birth defects vs. reassurance Implementation of prevention strategies
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Clear goals and objectives Plan for implementation
Procurement of resources: people, time, infrastructure Training of personnel Harmonization with MoH data systems and forms
Quality and value: relevant, recent, reliable Focus on quality (accuracy, timeliness, completeness) Focus on the needs/purpose of the system Plans for supervision/evaluation Plans for analysis and reporting/communicating
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Planning for Birth Defects Surveillance
Prevalence of Neural Tube Defects
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Neural tube defects are rare World estimate ~ 323,904 per year
Prevalence of 2.5/1,000 live births Small studies in African hospitals
Prevalence 0.23/1,000 to 7/1,000 live births Malawi: Queen Elizabeth Central Hospital
Prevalence of NTDs (0.62 /1,000) Other birth defects
• Orofacial clefts (0.67/1,000) • Hydrocephaly (0.23/1,000)
Anencephaly
Neural Tube Defects
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Spina bifida
Hospital-based Birth Defects Surveillance Systems
Advantages: Requires fewer resources and simpler protocol Can generate high quality case data, including exposures Useful when trying to establish (approximate) baseline data
Useful for documenting that a problem exists or not Useful for alerting health and government officials to the need for
investing further in surveillance and prevention strategies Very useful in settings where
Most births occur in hospitals
Surveillance at lower level facilities or in community is not feasible Able to calculate a prevalence estimate for the condition in a
particular hospital(s) if there is an accurate estimate of the source population/denominator for that hospital
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Hospital-based Birth Defects Surveillance Systems
Disadvantages:
Limited to prevalence estimates for hospital sites
Target population is limited to those born in the hospital
sites where data are collected
Hospital participation can change over time, making the
interpretation of findings and trends difficult
Prevalence estimates can be unreliable
Referral/selection bias can be variable, significant, difficult
to estimate: extrapolation to entire population is uncertain
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Protocol for Data Collection
Standardize data collection Uniform examination of all deliveries
Uniform identification of mothers on EFV-based ART
Uniform classification of birth defects
Uniform criteria for inclusion of cases
Uniform coding (ICD-10)
Use of structured abstraction form
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Inclusion Criteria
All Live Births and Fetal Deaths (stillbirths) Identified at participating hospital(s)
Birth defect must be diagnosed At birth, or within the first 12 hours after birth
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Example of abstraction form
Protocol for Birth Defects Surveillance
Protocol will be standard for every country Hospitals will
• Complete a reporting form for all deliveries• Make sure that forms are complete• Verify data• Send forms to a central office
Central office will• Verify data• Assign a number to each individual • Analyze data • Report data to MoH and other stake holders
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Potential Uses of Birth Defects Surveillance EFV-based ART Data
Surveillance for any increase in BD over and above
expected baseline prevalence
Reassurance vs. elevated concern
Can be used to look at more than one exposure of
concern: EFV, other ARVs, other new or commonly
used drugs
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Potential Uses of Birth Defects Surveillance Data
Case registry for case-control studies of possible risk
Link cases to health services
Case registry for studies of outcomes (e.g., survival,
development)
Evaluate the impact of prevention interventions
Education, advocacy, and health promotion
Monitor trends
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Why is Surveillance Important?
Without a surveillance system, you cannot Capture adverse birth outcomes Capture rare conditions Identify potential risk factors
Efavirenz and NTDs
Estimate the prevalence of a condition in a population
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QUESTIONS?
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For more information please contact Centers for Disease Control and Prevention
1600 Clifton Road NE, Atlanta, GA 30333Telephone: 1-800-CDC-INFO (232-4636)/TTY: 1-888-232-6348E-mail: [email protected] Web: http://www.cdc.gov
The findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the Centers for Disease Control and Prevention.
National Center on Birth Defects and Developmental DisabilitiesDivision of Birth Defects and Developmental Disabilities
RJ Berry - [email protected]
Diana Valencia - [email protected]
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