Long-term follow-up of children with confirmed newborn screening disorders using record linkage.

BACKGROUND: Long-term follow-up of children identified through newborn screening is a critical process of data collection and analysis for advancing the public health understanding of the health outcomes and service uptake of the affected children. This article describes first steps toward the long-term follow-up of newborn screening children with confirmed disorders through records linkage using population-based administrative data.
METHODS: The study cohort consisted of children born in 2006-2007 with confirmed disorders identified through newborn screening. Deterministic data linkage methods were used for record matching.
RESULTS: The cohort was followed up to 2 years after birth by matching to data sources including vital records, hospital discharges, the Congenital Malformations Registry, and Early Intervention to monitor service utilization, comorbidities, and mortality of the affected children. Of 1215 children with confirmed conditions identified through newborn screening, 25 deaths (2.1%) were identified, 86.1% used hospital (in- or outpatient) services, 36.1% were enrolled in the Congenital Malformations Registry, and 19.9% used the services of the Early Intervention program during the 2-year follow-up period.
CONCLUSIONS: Long-term follow-up of children with disorders identified through newborn screening can be initiated by using existing administrative data. This method is an inexpensive, cost-effective. and efficient approach for periodical assessment of services utilization, the efficiency of service delivery, and health outcomes for affected individuals.