Development and implementation of the first national data quality standards for population-based birth defects surveillance programs in the United States.

Background: Population-based birth defects surveillance is a core public health activity in the United States (U.S.); however, the lack of national data quality standards has limited the use of birth defects surveillance data across state programs.

Prevalence, Correlates, and Outcomes of Omphalocele in the United States, 1995-2005.

Objective: To examine the trends in the prevalence, epidemiologic correlates, and 1-year survival of omphalocele using 1995-2005 data from the National Birth Defects Prevention Network in the United States.

Methods: We examined 2,308 cases of omphalocele over 11 years from 12 state population-based birth defects registries. We used Poisson regression to estimate prevalence and risk factors for omphalocele and Kaplan-Meier survival curves and Cox proportional hazards regression to estimate survival patterns and hazard ratios, respectively, to examine isolated compared with nonisolated cases.

Birth defects data from population-based birth defects surveillance programs in the United States, 2007 to 2011: highlighting orofacial clefts.

© 2014 The Authors Birth Defects Research Part A: Clinical and Molecular Teratology Published by Wiley Periodicals, Inc.

The association between race/ethnicity and major birth defects in the United States, 1999-2007.

Objectives: We investigated the relationship between race/ethnicity and 27 major birth defects.

Methods: We pooled data from 12 population-based birth defects surveillance systems in the United States that included 13.5 million live births (1 of 3 of US births) from 1999 to 2007.

Prevalence and correlates of gastroschisis in 15 states, 1995 to 2005.

Objective: To identify trends in the prevalence and epidemiologic correlates of gastroschisis using a large population-based sample with cases identified by the National Birth Defects Prevention Network over the course of an 11-year period.

Methods: This study examined 4,713 cases of gastroschisis occurring in 15 states during 1995-2005, using public use natality data sets for denominators. Multivariable Poisson regression was used to identify statistically significant risk factors, and Joinpoint regression analyses were conducted to assess temporal trends in gastroschisis prevalence by maternal age and race and ethnicity.

Updated National Birth Prevalence estimates for selected birth defects in the United States, 2004-2006.

Background: The National Birth Defects Prevention Network collects state-specific birth defects surveillance data for annual publication of prevalence estimates and collaborative research projects. In 2006, data for 21 birth defects from 1999 through 2001 were presented as national birth prevalence estimates. The purpose of this report was to update these estimates using data from 2004 through 2006.

Geocoding capacity of birth defects surveillance programs: results from the National Birth Defects Prevention Network Geocoding Survey.

A Web-based survey focusing on geocoding of birth defects data was developed and administrated to gain an understanding of the capacity of state birth defects programs to geocode maternal residence and to identify barriers to geocoding birth defects data. The survey consisted of 21 questions related to geocoding of maternal residence, type of software used, barriers to geocoding, and data linkage. In August 2007, an e-mail with a Web link to the survey was sent to all state birth defects program contacts in the United States, including the District of Columbia, Puerto Rico, and the Centers for Disease Control and Prevention (CDC) requesting they complete the online survey.

Multistate study of the epidemiology of clubfoot.

Background: Although clubfoot is a common birth defect, with a prevalence of approximately 1 per 1000 livebirths, the etiology of clubfoot remains largely unknown. Studies of the prevalence and risk factors for clubfoot in the United States have previously been limited to specific states. The purpose of this study was to pool data from several birth defects surveillance programs to better estimate the prevalence of clubfoot and investigate its risk factors.

Birth defects interstate data exchange: a battle worth fighting?

Background: Regardless of where infants and children are delivered, diagnosed, or treated, an important aspect of population-based birth defects surveillance is ensuring the inclusion of children with birth defects in the catchment area. However, little is known as to how the lack of interstate birth defects data exchange affects program surveillance, monitoring, prevention, and referral activities. The study objectives were to determine the status of interstate birth defects data exchange agreements and to quantify statewide data on resident births occurring in nonresident states.

Case fatality among infants with congenital malformations by lethality.

Objective: Infant mortality rates continue to show that congenital anomalies are the leading cause of infant death in the United States. However, studies of factors contributing to increased mortality across different types of congenital anomalies have been limited. The objective of this study was to assess whether the likelihood of infant mortality varied by maternal race and ethnic group while considering the severity of the birth defect.