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Surveillance of Spina Bifida Across the Lifespan

Award Number: NU01DD000048
ORGANIZATION: NATIONAL CENTER ON BIRTH DEFECTS AND DEVELOPMENTAL DISABILITIES (NCBDDD)
OPDIV: CDC
AWARD CLASS: DISCRETIONARY
AWARD ACTIVITY TYPE: HEALTH SERVICES
PERIOD OF PERFORMANCE START DATE: 09/01/2024
PERIOD OF PERFORMANCE END DATE: 08/31/2029

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Surveillance of Spina Bifida Across the Lifespan - Surveillance of spina bifida (SB) across the lifespan is an important focus of study. Spina bifida is a neural tube defect present at birth which results in complex needs and functional limitations that require specialized care across the lifespan. Advances in healthcare have improved life expectancy for children born with SB with the majority living into adulthood. Prevalence across the lifespan in the U.S. is not well described. Most estimates focus on birth prevalence or are outdated. Surveillance of persons living with SB across the lifespan is critically needed. Component A: The proposed surveillance project will generate population-based estimates of SB prevalence across the lifespan in Minnesota. The project objective is to establish a unified surveillance system for SB to monitor prevalence across the lifespan, identify trends, and inform public health services. The project will utilize MN birth defects surveillance, vital records data, National Death index data, and data from large healthcare systems to identify individuals with SB living in MN. After identifying cases using the birth registry, statewide surveillance will be conducted by linking cases to administrative and clinical data sources to 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 prevalence and impact of SB within communities and contribute to the broader CDC national network data in SB. Findings will inform public health policy, clinical practice, and community supports to promote the health and well-being of individuals with SB. Component B: Active surveillance requires a great deal of resources. Administrative claims datasets provide another option for estimating prevalence and examining health outcomes. This passive surveillance project will use the MN All Payers Claims Database (APCD) to estimate the prevalence of people in Minnesota living with SB and examine their health outcomes across the lifespan. MN ACPD includes information on cost, quality, utilization, and disease burden with claims for more than 95% of Medicare enrollees, and Minnesota Health Care Programs (including Medicaid), and for 40% of commercially insured Minnesotans. The proposed passive surveillance study will replicate the methodology used in a CDC-funded national analysis of SB across the lifespan (Bershadsky et al., 2023) using ICD-10 codes to identify people living with SB. We will test the extent to which analyses of the MN APCD data produce similar prevalence estimates for SB by insurance type, age, and race. We will examine health experiences and outcomes with the intent of comparing the types of health outcomes that can be studied effectively with administrative data versus outcomes that must be studied using active surveillance to understand the extent to which administrative claims data can be used in place of active surveillance for basic prevalence work and demographics. This project will enrich the understanding of SB prevalence and its effect within communities in Minnesota and inform thinking at the national level. Findings will inform public health policy, clinical practice, and community supports to promote the health and well-being of individuals with SB. It will also showcase the utility of active and passive surveillance methods individually and paired together.


Issue Date FY	Funding FY	Legal Entity Name	Legal Entity Address	Legal Entity City	Legal Entity State	Legal Entity Zip Code	Legal Entity COUNTY	Legal Entity COUNTRY	Assistance Listing	Award Code	Budget Year	Action Date	Action Type	Action Amount

Issue Date FY: 2026 ( Subtotal = $0 )
2026	2025	REGENTS OF THE UNIVERSITY OF MINNESOTA	2221 University Ave SE Ste 100	Minneapolis	MN	55414	HENNEPIN	USA	Birth Defects and Developmental Disabilities - Prevention and Surveillance	01	2	2/10/2026	ADMINISTRATIVE SUPPLEMENT ( + OR - ) (DISCRETIONARY OR BLOCK AWARDS)	$0
2026	2024	REGENTS OF THE UNIVERSITY OF MINNESOTA	2221 University Ave SE Ste 100	Minneapolis	MN	55414	HENNEPIN	USA	Birth Defects and Developmental Disabilities - Prevention and Surveillance	01	2	2/10/2026	ADMINISTRATIVE SUPPLEMENT ( + OR - ) (DISCRETIONARY OR BLOCK AWARDS)	$0
														Subtotal = $0

Issue Date FY: 2025 ( Subtotal = $340,000 )
2025	2025	REGENTS OF THE UNIVERSITY OF MINNESOTA	2221 University Ave SE Ste 100	Minneapolis	MN	55414	HENNEPIN	USA	Birth Defects and Developmental Disabilities - Prevention and Surveillance	00	2	7/20/2025	NON-COMPETING CONTINUATION	$340,000
2025	2024	REGENTS OF THE UNIVERSITY OF MINNESOTA	2221 University Ave SE Ste 100	Minneapolis	MN	55414	HENNEPIN	USA	Birth Defects and Developmental Disabilities - Prevention and Surveillance	00	2	7/20/2025	NON-COMPETING CONTINUATION	$0
														Subtotal = $340,000

Issue Date FY: 2024 ( Subtotal = $340,000 )
2024	2024	REGENTS OF THE UNIVERSITY OF MINNESOTA	200 OAK ST SE	MINNEAPOLIS	MN	55455	HENNEPIN	USA	Birth Defects and Developmental Disabilities - Prevention and Surveillance	00	1	7/30/2024	NEW	$340,000
														Subtotal = $340,000

Grand Total All Awards = $680,000

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Surveillance of Spina Bifida Across the Lifespan

Award Number: NU01DD000048

ORGANIZATION: NATIONAL CENTER ON BIRTH DEFECTS AND DEVELOPMENTAL DISABILITIES (NCBDDD)

OPDIV: CDC

AWARD CLASS: DISCRETIONARY

AWARD ACTIVITY TYPE: HEALTH SERVICES

PERIOD OF PERFORMANCE START DATE: 09/01/2024

PERIOD OF PERFORMANCE END DATE: 08/31/2029

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