Surveillance of Spina Bifida Across the Lifespan

Description

This project estimates the prevalence of spina bifida (SB) across the lifespan in Minnesota. SB is a congenital disability that results in complex needs and functional limitations that require specialized care across the lifespan. Most children born with SB now live into adulthood, but SB prevalence estimates across the lifespan in the U.S. are generally outdated because estimates usually focus on birth prevalence.

This project will generate population-based estimates of SB prevalence across the lifespan in Minnesota. Active surveillance requires a great deal of resources. Instead, this project will identify individuals with SB living in Minnesota by replicating the passive methods used in a CDC-funded national analysis of SB across the lifespan, such as surveying Minnesota birth defects, vital records data, National Death Index data, administrative claims datasets, and data from large healthcare systems. The project will establish a unified surveillance system for SB to monitor prevalence across the lifespan, identify trends, and inform public health services.

Statewide surveillance will examine demographic characteristics, clinical features, healthcare encounters, co-morbidities, and outcomes. Surveillance data will provide insights into the healthcare needs, community supports, and service utilization patterns of people with spina bifida across the lifespan. Further, this project will enhance the understanding of the prevalence and impact of SB within communities and contribute to the broader CDC national network data on SB. Findings will inform public health policy, clinical practice, and community supports to promote the health and well-being of individuals with SB.