The current report brings together statistical data from 36 state-based programs and provides a directory of these programs. In addition, we present nine papers reporting on research and methodological studies.
These papers were selected from those submitted in response to a call for manuscripts distributed widely to all state programs, the NBDPN membership, and to subscribers to the birth defects surveillance list serve. The 9 papers included here underwent both editorial board and formal peer review. All papers received blinded review, and to avoid any possible conflict of interest full editorial responsibility was assigned to other editorial board members for those manuscripts co-authored by the editor.
These contributions cover a diverse array of topics. Two studies examine patterns of neural tube defects and other birth defects in relation to national policies of folic acid fortification of the food supply. Two studies examine the descriptive epidemiology of birth defects utilizing the metropolitan Atlanta database. Two papers focus on birth defects and infant mortality, one examining case fatality patterns by lethality of birth defect, and the other considering racial disparities in infant survival with omphalocele and gastroschisis. Two papers examine aspects of birth defects data management, one focusing on data structures and functional relationships between records while the other examines the quality of data abstracted from medical records compared with data obtained from maternal interviews. One paper presents the results of a follow-up survey to assess the effectiveness of information and referral services for parents of children with major birth defects. Taken collectively, these articles illustrate both the complexity and utility of birth defects surveillance data for public health needs assessment, program planning, and program evaluation; surveillance methods; as well as the findings from descriptive and analytical epidemiologic studies. We hope that researchers, surveillance staff, and investigators will build on these efforts as we seek to improve the science of birth defects surveillance and apply the findings of clinical and epidemiologic research to patient care and public health practice, leading to breakthroughs in both secondary and primary prevention.
This report could not have been completed without the generous commitment of time and energy on the part of many dedicated individuals. These include the members of the NBDPN annual report editorial board: