Neural tube defects surveillance: a national survey.

Neural tube defects (NTDs) are a class of birth defects characterized by defective closure of the neural tube during the first month of gestation. Reports from six states during the period of 1985-1994 demonstrated that the rate of NTDs in the United States varies by geographical area and by race/ethnicity. The reported rate ranged from 3.8 to 9.6 per 10,000 live births (CDC, ‘95). Recent epidemiological and basic science research has demonstrated that folic acid plays a significant role in the primary prevention of NTDs (Locksmith and Duff, ’98). In recent years the movement to establish population-based birth defects surveillance programs across the United States has gained momentum. By July 1997, programs had been established in 31 states, with organizing activities under way in several others (Edmonds, ‘97). These programs use a variety of casefinding methods, ascertain cases with differing sources; focus on varying segments of the perinatal and early childhood continuum; and handle coding, classification, medical record review and follow-up in a variety of ways. We undertook a national survey of state health agencies and birth defects surveillance programs to determine how NTD surveillance data are currently being collected and applied to specific activities aimed at the prevention of NTDs. Results of this survey are presented in this report, together with a set of recommendations for the enhancement of future activities.