The National Birth Defects Prevention Network (NBDPN) is a volunteer-based organization that addresses the issues of birth defects surveillance, research, and prevention under one umbrella by maintaining a national network of state and population-based birth defects programs. Members include public health officials, epidemiologists, academics, parents, and others committed to understanding factors that may lead to birth defects, identifying strategies for reducing birth defects, and working to prevent potential secondary disabilities. NBDPN provides members with guidance in data coding, presentation, and statistical techniques as applied to birth defects. It also publishes annual birth defects state profiles for all states.
State profiles include cases and prevalence of the following conditions: anencephalus, spina bifida without anencephalus, transposition of great arteries, tetralogy of Fallot, atrioventricular septical defect, hypoplastic left heart syndrome, cleft lip, cleft palate (without cleft lip), upper limb defect, lower limb defect, gastroschisis, and down syndrome.
The NBDPN state profile template includes state and national data on the number of cases and prevalence rates for 12 conditions. The national estimates are based on pooled data from states with active surveillance systems. States have tailored their profiles to include state-specific information on their surveillance systems and how birth defects data are used in their states.
http://www.nbdpn.org and related web pages. Accessed September 1, 2010.