Pilot Spina Bifida Surveillance Project

Synopsis NOFO #CDC-RFA-DD22-2204 solicits non-research, cooperative agreement applications to conduct a pilot project to assess the feasibility of identifying a population-based sample of children and adults with spina bifida to estimate prevalence and describe key health outcomes with the goal of identifying opportunities to improve the health of individuals living with spina bifida. Objectives include: (1) estimate prevalence of spina bifida across all ages; (2) describe health care utilization; (3) identify sources of care (specialized clinics or other health care); and (4) assess health status and long-term outcomes. The surveillance area can be a region within a state or the entire state with the recipient utilizing multiple data sources to generate an accurate and complete population-based sample. Expected data sources include: population-based birth defects surveillance systems, Medicare/Medicaid records, vital records, and electronic health record data. Background Spina bifida is a common type of structural birth defect with approximately 1,400 children born with spina bifida each year in the United States. Current estimates for the U.S. indicate a greater number of adults living with spina bifida than children. Conducting population-based surveillance of spina bifida-affected children and adults is challenging. Birth defects surveillance systems identify babies born with a birth defect, but do not follow them as children and adults. The National Spina Bifida Patient Registry (NSBPR) provides valuable longitudinal information on the clinical care provided by spina bifida clinics, but lacks information from other clinical settings and from the overall population of individuals living with spina bifida. Standard survey methods, such as those that sample households, would not identify enough children and adults with spina bifida to produce reliable prevalence estimates and description of the population. Therefore, the objective of this surveillance project is to examine the possibility of conducting population-based surveillance of children and adults with spina bifida by combining information from multiple sources (e.g. birth defects surveillance programs, Medicare/Medicaid, electronic health records, vital statistics). Through this surveillance activity, it would be possible to assess their health status and health care use. The National Spina Bifida Patient Registry (NSBPR) has increased our understanding of spina bifida by: Providing information on care and services delivered by specialized clinics to infants, children, and adults with spina bifida as well as data on the relationships between interventions, health outcomes, and quality of life. Highlighting the importance of maintaining bladder and bowel health, preventing skin breakdown, and assessing the severity of mobility issues experienced by individuals living with spina bifida. Establishing that appropriate care throughout the lifespan is an important aspect of ensuring individuals with spina bifida can reach their fullest potential. Objectives The objective of this pilot surveillance project is to assess the feasibility of creating a population-based sample of children and adults with spina bifida that can be used to (1) estimate prevalence, (2) describe their health care use, (3) determine sources of care (spina bifida clinics or other health care facilities), (4) describe their health status and long-term outcomes, and (5) identify opportunities to improve their health. The population included in this surveillance activity can be a region within a state or the entire state. All individuals with spina bifida within the surveillance area should be identified through existing data sources such as birth defects surveillance systems, Medicare/Medicaid, other health systems, or vital records. Similarly, health care use and health status should be collected from spina bifida clinics, Medicare/Medicaid, or other health systems in the region.