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Population-based Surveillance of Outcomes, Needs, and Well-being of Children and Adolescents with Congenital Heart Defects
Synopsis NOFO #CDC-RFA-DD22-2203 solicits non-research, cooperative agreement applications to improve health outcomes among children and adolescents affected with a congenital heart defect (CHD) and identify factors contributing to health disparities.
Objectives include:
using U. S. population-based
birth defects surveillance system data to identify and survey parents of children with CHD about their child’s health outcomes such as cardiac and other healthcare utilization, barriers to health care, quality of life, social and educational outcomes, and transition of care from childhood to adulthood as well as needs and experiences of the caregivers.
Background Congenital heart defects (CHDs) are the most common type of structural birth defects affecting approximately 1 in 110 live-born children.
Based on advances in survival, there are approximately 1 million children with a CHD in the United States.
With vast declines in mortality from pediatric heart disease over the past 30 years, it is vital to evaluate the health, social, educational, and quality of life outcomes beyond infancy and early childhood for affected children.
However, existing U. S. population-based data are lacking these outcomes among those born with a CHD and the changes that may occur with time and age.
Current population-based research relies on existing cross-sectional data from surveys such as the National Survey of Children’s Health.
However, this survey does not collect sufficient data to distinguish a CHD from acquired heart conditions, nor does it have detailed information on type of CHD, age at diagnosis, presence of other birth defects, and details at birth (e.g preterm birth).
Generating a population-based group of CHD-affected children is difficult.
Standard survey methods, such as those of a sample household survey, would not identify sufficient numbers of children living with a CHD.
Existing birth defects surveillance systems identify babies born with a birth defect, but do not continue to track identified children.
Therefore, the data is limited to their birth defect diagnoses and characteristics at time of birth.
For this surveillance project, we intend to use data from U. S. state birth defects surveillance systems to identify a population-based sample of children and adolescents born with a CHD and their caregivers.
Objectives The objective of this non-research, surveillance project is to identify a population-based sample of children and adolescents with a CHD identified through U. S. state birth defects surveillance systems and collect information via a parent/caregiver survey regarding the children’s cardiac and other healthcare utilization, barriers to health care, quality of life, social and educational outcomes, and transition of care from childhood to adulthood as well as needs and experiences of the caregivers.
The survey would be administered to parents/caregivers of all children and adolescents as well as to adolescents themselves.
The information collected from these population-based surveys will be used to inform current knowledge of the healthcare needs of the pediatric population with CHDs.
Objectives include:
using U. S. population-based
birth defects surveillance system data to identify and survey parents of children with CHD about their child’s health outcomes such as cardiac and other healthcare utilization, barriers to health care, quality of life, social and educational outcomes, and transition of care from childhood to adulthood as well as needs and experiences of the caregivers.
Background Congenital heart defects (CHDs) are the most common type of structural birth defects affecting approximately 1 in 110 live-born children.
Based on advances in survival, there are approximately 1 million children with a CHD in the United States.
With vast declines in mortality from pediatric heart disease over the past 30 years, it is vital to evaluate the health, social, educational, and quality of life outcomes beyond infancy and early childhood for affected children.
However, existing U. S. population-based data are lacking these outcomes among those born with a CHD and the changes that may occur with time and age.
Current population-based research relies on existing cross-sectional data from surveys such as the National Survey of Children’s Health.
However, this survey does not collect sufficient data to distinguish a CHD from acquired heart conditions, nor does it have detailed information on type of CHD, age at diagnosis, presence of other birth defects, and details at birth (e.g preterm birth).
Generating a population-based group of CHD-affected children is difficult.
Standard survey methods, such as those of a sample household survey, would not identify sufficient numbers of children living with a CHD.
Existing birth defects surveillance systems identify babies born with a birth defect, but do not continue to track identified children.
Therefore, the data is limited to their birth defect diagnoses and characteristics at time of birth.
For this surveillance project, we intend to use data from U. S. state birth defects surveillance systems to identify a population-based sample of children and adolescents born with a CHD and their caregivers.
Objectives The objective of this non-research, surveillance project is to identify a population-based sample of children and adolescents with a CHD identified through U. S. state birth defects surveillance systems and collect information via a parent/caregiver survey regarding the children’s cardiac and other healthcare utilization, barriers to health care, quality of life, social and educational outcomes, and transition of care from childhood to adulthood as well as needs and experiences of the caregivers.
The survey would be administered to parents/caregivers of all children and adolescents as well as to adolescents themselves.
The information collected from these population-based surveys will be used to inform current knowledge of the healthcare needs of the pediatric population with CHDs.
Related Programs
Birth Defects and Developmental Disabilities - Prevention and Surveillance
Department of Health and Human Services
Agency: Department of Health and Human Services
Office: Centers for Disease Control - NCBDDD
Estimated Funding: $4,000,000
Office: Centers for Disease Control - NCBDDD
Estimated Funding: $4,000,000
Who's Eligible
Relevant Nonprofit Program Categories
Obtain Full Opportunity Text:
NSF Publication 21-628
Additional Information of Eligibility:
Only one application per organization as determined by the organization’s Dun & Bradstreet number will be accepted. Eligible applicants must have the public health authority, legislative mandate or otherwise show legal access to the requisite data to conduct population-based birth defects surveillance. This authority allows unique and specific access to datasets from multiple data sources that are required to implement the activities outlined in this NOFO. Eligible applicants must document this authority in "Other Attachment Forms" with attachment name "Legal Authority". CDC will consider any application that does not include this required documentation as non-responsive, and it will receive no further review.
A Bona Fide Agent is an agency/organization identified by the state or local government as eligible to submit an application in lieu of a state or local government application. If applying as a Bona Fide agent of a state or local government, a letter from the state or local government as documentation of the status is required and should be submitted under “Other Attachment Forms” with attachment name “Bona Fide Agent.” If the Bona Fide Agent attachment does not specify legal authority, the applicant must include an attachment named “Legal Authority” in “Other Attachment Forms”.
The award ceiling for this NOFO is $400,000.
CDC will consider any application requesting an award higher than the ceiling amount as non-responsive and it will receive no further review.
Full Opportunity Web Address:
http://www.nsf.gov/publications/pub_summ.jsp?ods_key=nsf21628
Contact:
Agency Email Description:
wep2@cdc.gov
Agency Email:
Date Posted:
2022-03-29
Application Due Date:
Archive Date:
2022-06-27
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