National Birth Defects Prevention Study
The National Birth Defects Prevention Study (NBDPS) was a CDC-funded project with study centers in Arkansas, California, Georgia, Iowa, Massachusetts, New York, New Jersey, North Carolina, Texas, and Utah. NBDPS concluded in 2013, but the information is still being used to learn more about the environmental, genetic, and behavioral factors that can cause or contribute to specific birth defects.
NBDPS began in 1996 when Congress directed the Centers for Disease Control and Prevention (CDC) to establish the Centers for Birth Defects Research and Prevention (CBDRP). The centers were established in Arkansas, California, Georgia, Iowa, Massachusetts, New Jersey, New York, North Carolina, Texas, Utah, and Georgia. NBDPS was a population-based, case-control study that collected data on babies born between 1997 and 2011.
Among all centers, more than 35,000 women were interviewed for the NBDPS study. The women interviewed were both mothers who had pregnancies affected by birth defects and mothers who had babies unaffected by birth defects. The participating women were also asked to collect cheek cells from their families, which are now being used in genetic studies.
NBDPS data is not released to the public, and no information is given to anyone who is not an approved children’s health researcher on this study. The privacy of the women and their families is safeguarded so that no identifiable information is available to researchers.
Although NBDPS ended more than a decade ago, researchers continue to analyze this rich source of information on birth defects. The data has been invaluable and has furthered knowledge on birth defects and risk factors.
Birth Defects Included
Cardiovascular (Heart): anomalous pulmonary venous return, conotruncal heart defects, heterotaxy, hypoplastic left heart syndrome, obstructive heart defects, septal heart defects, single ventricle
Central Nervous System (Brain and Spine): anencephaly, Dandy-Walker malformations, encephalocele, holoprosencephaly, hydrocephaly, spina bifida
Eye: anophthalmia/microphthlamia, congenital cataracts, glaucoma
Ear: anotia/microtia
Orofacial: choanal atresia, cleft lip, cleft palate
Gastrointestinal: biliary atresia, esophageal atresia and tracheoesophageal fistula, intestinal atresia
Genitourinary: hypospadias (2nd or 3rd degree), renal agenesis (bilateral)
Musculoskeletal: bladder exstrophy, cloacal exstrophy, craniosynostosis, diaphragmatic hernia, gastroschisis, limb deficiency, omphalocele, sacral agenesis/caudal regression
Non-system specific: amniotic band sequence