Population-based birth defects surveillance: Challenges, opportunities, and recent developments.

Abstract

This report, prepared by the National Birth Defects Prevention Network (NBDPN) in collaboration with the U.S. National Center on Birth Defects and Developmental Disabilities at the Centers for Disease Control and Prevention, continues an annual practice initiated in 2000, providing materials to advance the field of birth defects surveillance, epidemiology, and public health practice. The reports comply with provisions of the Birth Defects Prevention Act of 1998 and its subsequent reauthorizations; these publications, first in Teratology, then in Birth Defects Research, Part A, and now in Birth Defects Research, provide researchers and public health professionals with access to an important source of population-based data. The 2017 report includes nine original articles, an editorial on the importance of surveillance and research in quickly identifying teratogenic exposures, and a data brief examining the prevalence of selected gastrointestinal birth defects pooling data from surveillance programs throughout the United States. The report also includes online materials: recent prevalence data on major birth defects from 43 population-based programs across the United States and a directory of these programs. The NBDPN continues its commitment to the primary prevention of birth defects and improvement of outcomes for children and families living with birth defects through the use of birth defects surveillance data for research, program planning, and program evaluation. This issue begins with an editorial by Friedman discussing unique aspects of birth defects research and methods of recognizing teratogenic exposures, including the important role that surveillance plays in rapidly identifying teratogenic exposures. Of the nine contributed papers, three address birth defects surveillance methods, two are descriptive epidemiology studies, three present the findings of etiologic research, and one focuses on health services utilization. Case et al. demonstrate the benefits and limitations of critical congenital heart defect screening for birth defects surveillance. Akkaya-Hocagil et al. show the utility of capture-recapture analysis to estimate the prevalence of congenital heart defects among adolescents, while McPherson et al. examine alternatives to perinatal autopsy for determining mechanism of death in stillbirths. St. Louis et al. summarize prevalence trends for 26 major birth defects based using data contributed by 11 states as part of a collaborative NBDPN project. Feldkamp et al. describe the epidemiology and prognosis of congenital diaphragmatic hernia cases in a Utah cohort based on clinical findings, sociodemographic patterns, and infant mortality. To explore the relationship between socioeconomic status and birth defects, Richardson and Josberger evaluated associations between maternal Medicaid enrollment and 46 birth defects. Two studies using data from the National Birth Defects Prevention Study follow: Howley et al. assessed associations between maternal thyroid medication use and 30 different categories of birth defects while Soim et al. explored associations between weather-related extreme heat events and neural tube defects. Health care utilization is the focus of a study by Sommerhalter et al. that examines proximity to pediatric cardiac surgical care among adolescents with congenital heart defects in 11 New York counties using population-based surveillance data and various geographic information sources. The articles included in the November 2017 issue were selected from those submitted in response to a call for manuscripts distributed to all state birth defect surveillance programs, NBDPN members, the birth defects surveillance list service, and posted on the NBDPN website (http://www.nbdpn.org). The articles included here underwent both editorial and formal blinded peer review. The review process was facilitated by the use of the online ScholarOne peer-review management system provided by Wiley for the Birth Defects Research editors. As with many collaborative enterprises, dedicated individuals too numerous to mention contributed their time and effort to ensure the quality of the NBDPN annual report. These include the many peer reviewers of these manuscripts and the authors of all the submitted manuscripts. We also thank the members of the NBDPN Data and Publications and Communications Committees, as well as Cara Mai, Jennifer Isenburg, and Erin Stallings at the National Center on Birth Defects and Developmental Disabilities. We thank the Birth Defects Research editors, especially Michel Vekemans and Christina Chambers, as well as Gian Carlo Santero for their help and assistance with the submission and publication of these manuscripts. We also would like to thank the Division of Congenital and Developmental Disorders at the National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, for its support of the NBDPN. Russell S. Kirby1, Marilyn L. Browne2,3 1Department of Community and Family Health, University of South Florida College of Public Health, Tampa, Florida 2New York State Department of Health, Congenital Malformations Registry, Albany, New York 3University at Albany School of Public Health, Rensselaer, New York