CDC Role in the CHD Community

Welcome to our latest blog update, where we delve into the significant contributions of the Centers for Disease Control and Prevention (CDC) and the National Center on Birth Defects and Developmental Disabilities (NCBDD) in the realm of Congenital Heart Disease (CHD). These organizations are at the forefront of advancing our understanding and improving the lives of those affected by CHD.

This month, Conquering CHD had the honor of engaging with the CDC directly, gaining valuable insights into their ongoing and future initiatives in CHD research and support. Our visit illuminated the extensive efforts and achievements of the CDC in this critical area of health.

Key Milestones in CHD Research and Support

  • Innovative Studies and Collaborations (2012–2015): The CDC conducted a project with Emory University, the New York State Department of Health, and the Massachusetts Department of Public Health to look at the number of children and teens living with heart defects, as well as adults living with these conditions. Scientists also looked at pregnancy-related health issues in women living with heart defects.
  • Expansion and In-Depth Analysis (2015–2019): The CDC launched a 4-year expansion project with five sites: University of Colorado in Denver, Duke University, Emory University, the New York State Department of Health, and the University of Utah in Salt Lake City. These programs are looking at information to estimate the number of people living with heart defects and better understand the survival, healthcare use, and longer-term outcomes of people living with heart defects.
  • CHD STAR Project (2019–2024): The CDC funded six sites in 2019 and one additional site in 2020 for the Congenital Heart Defects Surveillance across Time And Regions (CHD STAR) project: University of Arizona, Duke University, Emory University, New York State Department of Health, South Carolina Department of Health and Environmental Control, and University of Utah in 2019 and University of Iowa in 2020. CDC will fund these sites until 2024 to look at children, adolescents, and adults with heart defects over a 10-year time period.

Publications and knowledge dissemination that have come from this work:

CH Strong

CH STRONG stands for Congenital Heart Survey To Recognize Outcomes, Needs, and well-being. CH STRONG is a project to gather information about care and quality of life from adults living with CHD. The answers to these questions will help thousands of adults and children with CHD and their families receive better care and plan for their future.

From 2016 to 2019, the Centers for Disease Control and Prevention, in partnership with March of Dimes, University of Arizona College of Medicine, and the Arkansas Center for Birth Defects Research and Prevention surveyed young adults living with CHD through the Congenital Heart Survey To Recognize Outcomes, Needs, and well-being.

To learn more about this project and see the updates visit http://www.chstrong.org/project-updates.html

New Project: CH Strong Kids

Key points

  • CHSTRONG KIDS is the Congenital Heart Survey To Recognize Outcomes, Needs, and well-being of KIDS.
  • CHSTRONG KIDS gathers information about healthcare use, education, social experiences, and quality of life from families of children with heart defects.
  • We are asking thousands of families of children born with heart defects in Minnesota, Massachusetts, and Georgia between 2006 and 2021 to participate in our survey.

Overview

CHSTRONG KIDS is a survey of families of children born with heart defects. We will gather information about healthcare use, education, social experiences, and quality of life from families of children with heart defects. This information will help us identify important issues for children and adolescents with heart defects and their parents or caregivers.

CHSTRONG KIDS is organized by the National Center on Birth Defects and Developmental Disabilities at the Centers for Disease Control and Prevention, in collaboration with the following:

  • Minnesota Department of Health
  • Massachusetts Department of Public Health
  • Boston University School of Public Health

To learn more about this project and see other impacts the CDC and NCBBD has made visit their CHD landing Page: https://www.cdc.gov/ncbddd/heartdefects/.

We invite you to stay connected with us as we continue to explore these groundbreaking projects and their profound impact on the CHD community.

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