Wednesday, April 24, 2024
4/24/2024
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
HHS’ Tracking Accountability in Government Grants System (TAGGS) website provides access to detailed descriptions of grants, loans, aggregated direct payments and other types of financial assistance awarded by the HHS Operating Divisions (OPDIVs) and the Office of the Secretary Staff Divisions (STAFFDIVs).
