Surveillance of Spina Bifida across the Life - Utah Center COMPONENT A - Project Abstract Spina bifida is a serious and complex congenital anomaly of the spine affecting about 1 in 2,700 births in the United States. The primary lesion of the spine often causes a cascade of effects on the brain (hydrocephalus) and nerves, which in turn can lead to significant morbidity and disability such as lower limb paralysis, clubfeet, loss of sphincter control, and other medical complications. With improved treatment, nearly 90% of people with spina bifida are now living into adulthood. Yet, there are significant gaps in our understanding of the clinical and public health impact of spina bifida beyond infancy and early childhood. For example, information is scarce or entirely lacking on crucial data such as population prevalence, morbidity, mortality, use of health resources, and potential disparities. In Utah we are uniquely positioned to help address these gaps by leveraging the state’s linked clinical and administrative data systems and an experienced multidisciplinary team of epidemiologists, data scientists, and clinicians. This project proposes to develop and deploy a statewide, population-based surveillance program of individuals with spina bifida of all ages to measure prevalence, resource use, source of care, and outcomes through the lifespan. The project will generate crucial information on morbidity and complications, mortality and survival, and sources and patterns of health care use. Layering this information on sociodemographic information (personal and neighborhood level) will provide indications of potential health disparities, by geography (e.g., rural vs. urban residency), race and ethnicity, insurance status, and indices of deprivation. For added relevance, the project focuses on the current available data (2019-2024 proposed). We will identify individuals with spina bifida utilizing the Utah Birth Defect Network (for births from 1994 onwards) and vital records data as primary sources of case ascertainment (Strategy 1), combined with the Utah Population Database for older individuals. The Utah Population Database is a unique population-based resource in Utah with established linkages to multiple clinical and administrative data sources. These linkages will be used to develop rich layers of information on sociodemographic indicators, health outcomes, use of resources, residence (via geocoding), which will result in a deduplicated, de-identified dataset for pooled analyses (Strategy 2). We will develop a systematic communication plan to disseminate information about the findings to multiple stakeholders, including the medical and public health community, family support groups, and policy makers (Strategy 3). The information generated through the project will serve to 1) inform clinical care and public health materials, program, and interventions; 2) improve our understanding of the prevalence of spina bifida, age-specific mortality, and causes of death; 3) improve our understanding of the healthcare use and sources of care for individuals with spina bifida; 4) improve the accuracy and efficiency of identifying individuals with spina bifida, reporting, and outcomes; and 5) improve the quality of data for action.
