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Minnesota Congenital Heart Defects Family Survey

Award Number: NU50DD000110
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: 09/30/2022
PERIOD OF PERFORMANCE END DATE: 09/29/2026

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Minnesota Congenital Heart Defects Family Survey - In Minnesota (MN), the Birth Defects and Critical Congenital Heart Defects (CCHD) Long Term Follow Up (LTFU) programs are co-located in the Children and Youth with Special Health Needs (CYSHN) section in the Child and Family Health (CFH) Division at the Minnesota Department of Health (MDH). A joint effort with the Birth Defects and CCHD LTFU Programs will establish a population-based cohort of children and adolescents living with congenital heart defects (CHDs) who were born in MN between 2006 and 2021. The MN Congenital Heart Defects Family Survey project will cover a catchment area of about 40,000 births per year for the period between 2006 to 2012. This covers mothers who resided in the Twin Cities 7-county metro area (Minneapolis/St. Paul and surrounding communities), and accounts for about 58% of total in-state births to MN residents. For 2013 and later years, the catchment area expands to about 65,000 live births per year and covers mothers who resided anywhere in the state. The two different stages are due to gradual statewide expansion of birth defect surveillance as resources allowed. We will identify children and adolescents born between 2006 and 2021 diagnosed with a CHD before age 1 primarily from the Birth Defects Information System (BDIS) database on the Minnesota Electronic Disease Surveillance System (MEDSS) platform. These data are collected using active case finding. We will identify additional children and adolescents with CHD during survey recruitment who are not captured initially by the MN birth defects surveillance. In addition to the minimally required list in the NOFO, we propose 7 additional CHDs and will be able to offer the survey to an expected 2,200 eligible families with a child between ages 2-17 diagnosed with a CHD in the first year of life. We will work closely with the Office of Vital Records (OVR) for obtaining birth and death data. The MN Congenital Heart Defects Family Survey and required data sharing with CDC will be reviewed and approved by MDH Legal Unit and Institutional Review Board. We will form a CHD advisory work group of partners including cardiologists, other health care professionals, and community organizations who support children and adolescents with a CHD and their families to advise on tracking and tracing of CHD cases, recruitment of caregivers, CHD classification for reporting, priorities for survey data analyses, and a communication and dissemination plan. Families and caregivers will be recruited for the survey according to the established survey protocol to collect information about longer-term outcomes of their children with CHD and their needs and experiences. We will work with CDC and other recipients to finalize the survey materials and to develop a multi-site data analysis plan. We will assure the completeness, accuracy, and consistency of data and submit standardized deidentified individual records to CDC. We will achieve the following outcomes through this project. Short-term outcomes are as follows: • Improved understanding of healthcare barriers, utilization, and other outcomes • Improved understanding of needs and experiences of caregivers of individuals with CHD • Improved understanding of racial/ethnic and socioeconomic patterns in experiences and outcomes • Improved understanding of the strengths and limitations of population-based surveillance among children and adolescents with CHD • Improved information to stakeholders on outcomes of children with CHD and needs/experiences of caregivers Intermediate outcomes are as follows: • Increased awareness among stakeholders of issues and disparities among U.S. children with CHD and their caregivers • Improved ability to develop surveillance programs to understand outcomes of individuals with CHD


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: 2025 ( Subtotal = $0 )
2025	2024	MINNESOTA DEPARTMENT OF HEALTH	625 ROBERT ST N	SAINT PAUL	MN	55155	RAMSEY	USA	Birth Defects and Developmental Disabilities - Prevention and Surveillance	02	3	5/1/2025	ADMINISTRATIVE SUPPLEMENT ( + OR - ) (DISCRETIONARY OR BLOCK AWARDS)	$0
2025	2024	MINNESOTA DEPARTMENT OF HEALTH	625 ROBERT ST N	SAINT PAUL	MN	55155	RAMSEY	USA	Birth Defects and Developmental Disabilities - Prevention and Surveillance	01	3	3/27/2025	ADMINISTRATIVE SUPPLEMENT ( + OR - ) (DISCRETIONARY OR BLOCK AWARDS)	$0
2025	2023	MINNESOTA DEPARTMENT OF HEALTH	625 ROBERT ST N	SAINT PAUL	MN	55155	RAMSEY	USA	Birth Defects and Developmental Disabilities - Prevention and Surveillance	01	3	3/27/2025	ADMINISTRATIVE SUPPLEMENT ( + OR - ) (DISCRETIONARY OR BLOCK AWARDS)	$0
2025	2023	MINNESOTA DEPARTMENT OF HEALTH	625 ROBERT ST N	SAINT PAUL	MN	55155	RAMSEY	USA	Birth Defects and Developmental Disabilities - Prevention and Surveillance	02	3	5/1/2025	ADMINISTRATIVE SUPPLEMENT ( + OR - ) (DISCRETIONARY OR BLOCK AWARDS)	$0
2025	2022	MINNESOTA DEPARTMENT OF HEALTH	625 ROBERT ST N	SAINT PAUL	MN	55155	RAMSEY	USA	Birth Defects and Developmental Disabilities - Prevention and Surveillance	02	3	5/1/2025	ADMINISTRATIVE SUPPLEMENT ( + OR - ) (DISCRETIONARY OR BLOCK AWARDS)	$0
2025	2022	MINNESOTA DEPARTMENT OF HEALTH	625 ROBERT ST N	SAINT PAUL	MN	55155	RAMSEY	USA	Birth Defects and Developmental Disabilities - Prevention and Surveillance	01	3	3/27/2025	ADMINISTRATIVE SUPPLEMENT ( + OR - ) (DISCRETIONARY OR BLOCK AWARDS)	$0
														Subtotal = $0

Issue Date FY: 2024 ( Subtotal = $400,000 )
2024	2024	MINNESOTA DEPARTMENT OF HEALTH	625 ROBERT ST N	SAINT PAUL	MN	55155	RAMSEY	USA	Birth Defects and Developmental Disabilities - Prevention and Surveillance	00	3	6/25/2024	NON-COMPETING CONTINUATION	$400,000
2024	2023	MINNESOTA DEPARTMENT OF HEALTH	625 ROBERT ST N	SAINT PAUL	MN	55155	RAMSEY	USA	Birth Defects and Developmental Disabilities - Prevention and Surveillance	02	2	4/22/2024	ADMINISTRATIVE SUPPLEMENT ( + OR - ) (DISCRETIONARY OR BLOCK AWARDS)	$0
2024	2023	MINNESOTA DEPARTMENT OF HEALTH	625 ROBERT ST N	SAINT PAUL	MN	55155	RAMSEY	USA	Birth Defects and Developmental Disabilities - Prevention and Surveillance	01	2	1/9/2024	ADMINISTRATIVE SUPPLEMENT ( + OR - ) (DISCRETIONARY OR BLOCK AWARDS)	$0
2024	2023	MINNESOTA DEPARTMENT OF HEALTH	625 ROBERT ST N	SAINT PAUL	MN	55155	RAMSEY	USA	Birth Defects and Developmental Disabilities - Prevention and Surveillance	03	2	9/20/2024	ADMINISTRATIVE SUPPLEMENT ( + OR - ) (DISCRETIONARY OR BLOCK AWARDS)	$0
2024	2023	MINNESOTA DEPARTMENT OF HEALTH	625 ROBERT ST N	SAINT PAUL	MN	55155	RAMSEY	USA	Birth Defects and Developmental Disabilities - Prevention and Surveillance	00	3	6/25/2024	NON-COMPETING CONTINUATION	$0
2024	2022	MINNESOTA DEPARTMENT OF HEALTH	625 ROBERT ST N	SAINT PAUL	MN	55155	RAMSEY	USA	Birth Defects and Developmental Disabilities - Prevention and Surveillance	01	2	1/9/2024	ADMINISTRATIVE SUPPLEMENT ( + OR - ) (DISCRETIONARY OR BLOCK AWARDS)	$0
2024	2022	MINNESOTA DEPARTMENT OF HEALTH	625 ROBERT ST N	SAINT PAUL	MN	55155	RAMSEY	USA	Birth Defects and Developmental Disabilities - Prevention and Surveillance	02	2	4/22/2024	ADMINISTRATIVE SUPPLEMENT ( + OR - ) (DISCRETIONARY OR BLOCK AWARDS)	$0
2024	2022	MINNESOTA DEPARTMENT OF HEALTH	625 ROBERT ST N	SAINT PAUL	MN	55155	RAMSEY	USA	Birth Defects and Developmental Disabilities - Prevention and Surveillance	00	3	6/25/2024	NON-COMPETING CONTINUATION	$0
2024	2022	MINNESOTA DEPARTMENT OF HEALTH	625 ROBERT ST N	SAINT PAUL	MN	55155	RAMSEY	USA	Birth Defects and Developmental Disabilities - Prevention and Surveillance	03	2	9/20/2024	ADMINISTRATIVE SUPPLEMENT ( + OR - ) (DISCRETIONARY OR BLOCK AWARDS)	$0
														Subtotal = $400,000

Issue Date FY: 2023 ( Subtotal = $400,000 )
2023	2023	MINNESOTA DEPARTMENT OF HEALTH	625 ROBERT ST N	SAINT PAUL	MN	55155	RAMSEY	USA	Birth Defects and Developmental Disabilities - Prevention and Surveillance	00	2	5/30/2023	NON-COMPETING CONTINUATION	$400,000
2023	2022	MINNESOTA DEPARTMENT OF HEALTH	625 ROBERT ST N	SAINT PAUL	MN	55155	RAMSEY	USA	Birth Defects and Developmental Disabilities - Prevention and Surveillance	00	2	5/30/2023	NON-COMPETING CONTINUATION	$0
2023	2022	Department of Health Minnesota	625 Robert St N	Saint Paul	MN	55155	RAMSEY	USA	Birth Defects and Developmental Disabilities - Prevention and Surveillance	01	1	3/13/2023	ADMINISTRATIVE SUPPLEMENT ( + OR - ) (DISCRETIONARY OR BLOCK AWARDS)	$0
														Subtotal = $400,000

Issue Date FY: 2022 ( Subtotal = $400,000 )
2022	2022	Department of Health Minnesota	625 Robert Street North	St. Paul	MN	55164		USA	Birth Defects and Developmental Disabilities - Prevention and Surveillance	00	1	7/28/2022	NEW	$400,000
														Subtotal = $400,000

Grand Total All Awards = $1,200,000

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Minnesota Congenital Heart Defects Family Survey

Award Number: NU50DD000110

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: 09/30/2022

PERIOD OF PERFORMANCE END DATE: 09/29/2026

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