Abstract
BACKGROUND: The recurrence risk for neural tube defects (NTDs) in subsequent pregnancies is approximately 3%, or 40 times the background risk. Prevention projects target these highβrisk women to increase their folic acid consumption during the periconceptional period, a behavior which decreases their recurrence risk by at least 85%. This study surveyed birth defect surveillance programs to assess their NTD recurrence prevention activities and to identify components of intervention projects that might be implemented in states with limited resources. METHODS: In 2005, the National Birth Defects Prevention Network developed and distributed an online survey to primary state birth defects surveillance contacts for the purpose of gathering information on NTD recurrence prevention activities in the United States. RESULTS: Responses came from 37 contacts in 34 states and Puerto Rico. There were 13 active NTD recurrence prevention projects, four past projects, and three planned projects. Fifteen past and present projects recommended that women with a prior NTDβaffected birth take 4.0 mg of folic acid daily, and four projects provided folic acid to the women. Reasons given for not having an NTD recurrence prevention project included staffing limitations (53%), lack of funds (47%), lack of priority (18%), and confidentiality/privacy concerns (6%). CONCLUSIONS: Only 15 states and Puerto Rico had or were planning NTD recurrence prevention projects. An NTD recurrence prevention project using minimal resources should consist of timely case ascertainment, educational materials, and mechanisms for disseminating these materials. Birth Defects Research (Part A), 2009. Β© 2009 WileyβLiss, Inc.