Assessment of state approaches to sharing and exchanging birth defects surveillance data

Background: During a period when state-based program services and activities faced financial challenges, the functional status of birth defects surveillance programs was assessed. Objective: To evaluate the structure and capabilities of current state and territorial birth defects surveillance programs and registries and to identify any trends in the way programs share, exchange and use data by examining both recent and anticipated changes and activities. Methods: In 2009, ASTHO conducted an online survey of state and territorial birth defects surveillance programs. Potential participants were identified by the National Birth Defects Prevention Network and the Centers for Disease Control and Prevention and recruited through an email letter. Results: Thirty-eight of the 43 (88%) responding states and territories reported having a functional birth defects surveillance program. A majority of respondents indicated that if their state had laws or regulations in place, they facilitated case record abstraction (97%) and the reporting or identification of birth defects cases (88%) between programs and partners. The most common data collection methods reported were manual paper form or non-real time data upload, while data was most commonly exchanged through the internet or a network. Nearly 78% of programs reported using their data for statistical analysis to monitor rates or patterns, while 46% of programs were engaged in cluster investigations. Two-thirds of programs were engaged in research or data projects using their data. Conclusions: Variability exists between states in the ways they collect data and their method of data exchange with partners and data sources, with state laws and regulations determining the information that is able to be shared and accessed. Through the strengthening of partnerships and creating a more efficient and effective two-way data exchange system, it can potentially serve as a basis for increasing funding support, increasing data sources, and improving the overall birth defects surveillance system.