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Long-term follow-up of children with confirmed newborn screening disorders using record linkage
Ying Wang1, Michele Caggana, Marilyn Sango-Jordan
1Congenital Malformations Registry, Bureau of Environmental and Occupational Epidemiology, Center for Environmental Health, New York State Department of Health, Flanigan Square, 547 River Street, Troy, NY 12180-2216, USA. wxy01@health.state.ny.us
Insights
Long-term follow-up of children identified through newborn screening is crucial for understanding health outcomes. Linking administrative data provides an efficient method for monitoring these children and their service utilization.
Area of Science:
- Public Health
- Pediatrics
- Health Informatics
Background:
- Long-term follow-up of children identified via newborn screening is essential for public health research.
- This study explores using administrative data linkage for tracking health outcomes and service uptake in these children.
Purpose of the Study:
- To describe the initial steps of establishing a long-term follow-up system for children with confirmed newborn screening disorders.
- To utilize population-based administrative data for records linkage and analysis.
Main Methods:
- The study cohort included children born in 2006-2007 with confirmed newborn screening disorders.
- Deterministic data linkage was employed to match records across various administrative data sources.
Main Results:
- The cohort was followed for 2 years post-birth, with data linked to vital records, hospitalizations, a congenital malformations registry, and early intervention services.
- Key findings include a 2.1% mortality rate, 86.1% hospital service utilization, 36.1% enrollment in the Congenital Malformations Registry, and 19.9% use of Early Intervention services.
Conclusions:
- Long-term follow-up of children with screened disorders can be effectively initiated using existing administrative data.
- This approach is cost-effective and efficient for assessing service utilization, delivery, and health outcomes.
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.
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