Methodological innovations in data gathering: newborn screening linkage with live births records, Michigan,...

To match Michigan birth and newborn screening records to identify and follow-up potentially unscreened infants, assess data quality, and demonstrate the utility of Link Plus linkage software for matching MCH related administrative datasets.

Birth and newborn screening records maintained by the Michigan Department of Community Health from January 2007 through March 2008 were used in this study. Link Plus, a freely-available probabilistic record linkage software program developed at the Centers for Disease Control and Prevention, was used to match records. Linkage performance was assessed by the linkage success rate (percentage of valid matches). Follow-up of un-matched records was conducted by the Michigan Newborn Screening Follow-up Program.

Nearly all (99.2%) of the 142,178 birth records included in this study were successfully matched to newborn screening records. Following a transition to a web-based electronic birth certificate system and inclusion of a newborn screening card identification number on the birth record in 2008, the linkage success rate increased to 99.6% based on analysis of approximately 18,000 records. Of approximately 600 un-matched records, nearly half had received a newborn screen. Approximately 8% of un-matched records were due to parental refusal of newborn screening. Nine children received an initial screen as a result of this study; one was confirmed as having sickle cell trait.

We have demonstrated that a freely available record linkage software, Link Plus, can be used to successfully match records of MCH databases thereby providing an opportunity for further research and quality assurance investigations.