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Published 2003 Wiley-Liss, Inc.

Birth Defects Research (Part A) 67:617–624 (2003)

The Metropolitan Atlanta Congenital Defects Program: 35 Years of Birth Defects Surveillance at the Centers for Disease Control and Prevention

Adolfo Correa-Villase ˜nor,* Janet Cragan, James Kucik, Leslie O’Leary, Csaba Siffel, and Laura Williams

Division of Birth Defects and Developmental Disabilities, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, Georgia 30333

BACKGROUND: The Metropolitan Atlanta Congenital Defects Program (MACDP) is a population-based birth defects surveillance program administered by the Centers for Disease Control and Prevention (CDC) that has been collecting, analyzing, and interpreting birth defects surveillance data since 1967. This paper presents an overview of MACDP current methods and accomplishments over the past 35 years. METHODS: MACDP actively monitors major birth defects among infants born to residents of five counties of metropolitan Atlanta, an area with approximately 50,000 annual births. Cases are ascertained from multiple sources, coded using a modified British Pediatric Association six-digit code, and reviewed and classified by clinical geneticists. RESULTS: MACDP has monitored trends in birth defects rates and has served as a case registry for descriptive, risk factor, and prognostic studies of birth defects, including studies of Agent Orange exposure among Vietnam War veterans, maternal use of multivitamins, diabetes, febrile illnesses, and survival of children with neural tube defects. MACDP has served as a data source for one of the centers participating in the National Birth Defects Prevention Study, and for developing and evaluating neural tube defects prevention strategies related to the periconceptional use of folic acid supplements. CONCLUSIONS: Since its inception, MACDP has served as a resource for the development of uniform methods and approaches to birth defect surveillance across the United States and in many other countries, monitoring birth defects rates, and as a case registry for various descriptive, etiologic, and survival studies of birth defects. MACDP has also served as a training ground for a large number of professionals active in birth defects epidemiology. Birth Defects Research (Part A) 67:617–624, 2003. Published 2003 Wiley-Liss, Inc.

INTRODUCTION

Birth defects are a leading cause of infant mortality in many parts of the world (Rosano et al., ‘00). In the United States, birth defects account for 21% of all deaths among infants (CDC, ’98; Petrini et al., ‘02). Most children who are born with major birth defects and survive infancy are affected physically, mentally, or socially and can be at increased risk for morbidity from various health disorders. Because birth defects have a substantial public health im- pact on mortality, morbidity, disability, and health care costs (Hall et al., ‘78; MacLeod, ‘93; Yoon et al., ‘97; Rosano et al., ‘00), there has been a growing interest in defining their causes and in developing, implementing, and evalu- ating prevention programs. Public health surveillance sys- tems for birth defects play an important role in collecting and analyzing data on birth defects in human populations and enable us to learn about occurrence patterns. This knowledge is essential in identifying the causes of birth defects, informing health policy decisions, and developing and evaluating prevention programs.

The Metropolitan Atlanta Congenital Defects Program (MACDP) is a population-based birth defects surveillance program created in 1967 following the thalidomide trag- edy. MACDP is designed to provide early warning of increases in the prevalence of defects by monitoring trends over time. Founded as a collaboration of the Centers for Disease Control and Prevention (CDC), Emory University,

and the Georgia Mental Health Institute, and administered by CDC, MACDP has been collecting, analyzing, and in- terpreting birth defects surveillance data on an ongoing basis. “Birth defects (i.e., congenital defects) are reportable conditions in Georgia, and the Georgia Department of Human Resources (DRH) has given MACDP the authority, renewed annually, to conduct active surveillance of birth defects in metropolitan Atlanta with and on behalf of the Georgia Division of Public Health, DRH.” The specific objectives of MACDP today are essentially the same as when the program started (CDC, ‘89): (1) to monitor, reg- ularly and systematically, births of malformed infants in the population for changes in incidence or unusual pat- terns suggestive of environmental influences, including drugs, infections, and chemical and physical agents; (2) to develop and maintain a case registry for use in epidemio- logic and genetic studies; (3) to quantify the morbidity and mortality associated with birth defects; and (4) to provide

  • This article is a US government work and, as such, is in the public domain in

the United States of America. *Correspondence to: Adolfo Correa-Villase˜nor, National Center on Birth De- fects and Developmental Disabilities, Centers for Disease Control and Preven- tion, 1600 Clifton Road, Mailstop E-86, Atlanta, GA 30333. E-mail: acorrea@cdc.gov Published online in Wiley InterScience (www.interscience.wiley.com). DOI: 10.1002/bdra.10111

Birth Defects Research (Part A): Clinical and Molecular Teratology 67:617–624 (2003)

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