Congenital Heart Defects Research Program
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Overview
About Congenital Heart Defects
Congenital heart defects (CHDs) occur in approximately 1% of births per year in the United States. CHD anatomy can vary:
- Complex anatomy, which involves severe defects requiring surgery in the first year of life
- Shunt defects, which permit mixing of blood and do not always require intervention
- Valve defects, which may progress over time
- Other defects such as coronary artery anomalies
The consequences of heart defects vary based on a number of factors including the type of defect and repair. Survival in infants with CHD through adulthood has significantly increased over the past few decades due to screening programs that allow for early detection and innovative surgical procedures that correct or modify structural defects. In addition, collaborative public health surveillance among clinicians, public health professionals, and other researchers has facilitated an environment where CHD survival can be evaluated alongside comorbidities and health care utilization to influence decision making in clinical settings.
About Our Program
The Emory Adolescent and Adult Congenital Heart Defect Program has been working collaboratively with institutions across the nation since 2012 to better understand the strengths and limitations of CHD surveillance in the U.S., describe characteristics and understand health care utilization of the adolescent and adult CHD population, and inform actions to improve health outcomes.
View Our CHD Education Modules
Projects and Publications
CHD Surveillance Projects
Since its inception, the CHD Research Program has been continuously involved in CHD surveillance across the U.S. Read about our previous and current surveillance projects here.
Funding/Support
Centers for Disease Control and Prevention, Grant/Award Number: CDC‐RFA‐DD12-1207
Surveillance Period
2008-2010
Collaborators
- Centers for Disease Control and Prevention, National Center on Birth Defects and Developmental Disabilities, Atlanta, GA
- Emory University School of Medicine and Rollins School of Public Health, Atlanta, GA
- Massachusetts Department of Health, Boston, MA
- New York State Department of Health, Albany, NY
Priorities
- To determine feasibility of population-based CHD surveillance across multiple sites
- To estimate the prevalence of CHD among adolescents and adults
- To examine survival, health care utilization, and longer term outcomes among adolescents and adults with CHD
What We Learned
- Many U.S. children, teens, and adults live with and receive care for CHD
- 20-33% of adolescents and adults with CHD have been diagnosed with a mental health condition
- Many women with CHD become pregnant and experience pregnancy-related health complications
- Severe CHD ranged from 11% (NY) to 20% (GA)
- Medicaid coverage: > 75% (MA), 31% (GA), 28% (NY)
- Capture of comorbid conditions varied across sites
- Older patients and those with non-complex CHD contribute to health burden
- Cardiac complications and comorbid conditions are common
Funding/Support
Centers for Disease Control and Prevention, Grant/Award Number: CDC‐RFA‐DD15-1506
Surveillance Period
2011-2013
Collaborators
- Centers for Disease Control and Prevention, National Center on Birth Defects and Developmental Disabilities, Atlanta, GA
- Emory University School of Medicine and Rollins School of Public Health, Atlanta, GA
- Duke University School of Medicine, Duke Clinical Research Institute, Durham, NC
- New York State Department of Health, Albany, NY
- University of Colorado Anschutz Medical Campus, Departments of Internal Medicine and Pediatrics, Divisions of Cardiology, Aurora, CO
- University of Utah, Salt Lake City, UT
Priorities
- To determine the prevalence of CHD across the lifespan, health care utilization among adolescents and adults, comorbidities, heart failure
- To assess barriers to appropriate transition of adolescents to adult cardiac care (NY, GA)
- To develop education modules (GA)
What We Learned
- 24% complex anatomy, 37% shunt, 53% valve
- 69% children
- 19% Black or multi-racial, 15% Hispanic
- 48% have public insurance, which is more common for children
- Overall retention in care was low when transitioning from pediatric to adult care
- Severe CHD individuals were more likely to transfer to adult CHD care than those with shunt and/or valve lesion
- Transfer to adult care typically was to an adult CHD care setting
- Barriers to care transition included concern with replacing a strong relationship with pediatric providers, concern with obtaining insurance coverage into adulthood, and inability to locate an appropriate adult provider.
Funding/Support
Centers for Disease Control and Prevention, Grant/Award Number: CDC‐RFA‐DD19-1902A and 1902B
Component A
Surveillance Period
2010 - 2019
Collaborators
- Centers for Disease Control and Prevention, National Center on Birth Defects and Developmental Disabilities, Atlanta, GA
- Emory University School of Medicine and Rollins School of Public Health, Atlanta, GA
- University of Arizona, Department of Pediatrics, College of Medicine, Tucson, AZ
- Duke University School of Medicine, Duke Clinical Research Institute, Durham, NC
- University of Iowa, College of Public Health, Department of Epidemiology, Iowa City, IA
- New York State Department of Health, Albany, NY
- South Carolina Department of Health and Environmental Control, Columbia, SC
- University of Utah, Salt Lake City, UT
Priorities
- To assess and conduct a population-based surveillance of individuals with CHD, ages 1-45 years
- To examine descriptive epidemiology of CHD, survival, health care utilization, and comorbidities over time
- To improve understanding of health outcomes of CHD among public health practitioners
- To estimate age-specific mortality
Improved treatment of CHDs in the recent decades has increased survival; however, little data exist on health care utilization, comorbidities, long-term health and non-health outcomes and mortality to inform quality of life and develop effective secondary prevention strategies to address health complications among those affected. Through the expansion of an integrated surveillance system for CHD, using individual encounter level data for 2010-2019, we aimed to:
- Improve understanding of age-specific mortality, health care utilization, comorbidities, survival and other outcomes over time;
- Gain a greater understanding of the strengths and limitations of databases used for CHD surveillance; and
- Increase CHD awareness among the public and stakeholders.
Component B
Surveillance Period
2010 - 2019
Collaborators
- Emory University School of Medicine and Rollins School of Public Health, Atlanta, GA
- Emory University School of Medicine, Department of Biomedical Informatics, Atlanta, GA
Priorities
- To validate billing codes for CHDs in health care claims data
- To determine best ways to use health care claims for CHD surveillance across the lifespan
Building on existing CHD surveillance infrastructure and using individual encounter level integrated electronic health record and administrative data for 2010-2019, and through validation of health care claims data in an integrated surveillance system for CHDs, this project aimed to:
- Improve understanding of the validity and utility of health care claims data for surveillance of CHDs
- Improve the accuracy of identification and surveillance of CHDs
- Increase awareness among the public and stakeholders
Funding/Support
Centers for Disease Control and Prevention, Grant/Award Number: CDC-RFA-DD-24-0051A and B
Component A
Surveillance Period
2020 - 2024
Collaborators
- Centers for Disease Control and Prevention, National Center on Birth Defects and Developmental Disabilities, Atlanta, GA
- Emory University School of Medicine and Rollins School of Public Health, Atlanta, GA
- Duke University School of Medicine, Duke Clinical Research Institute, Durham, NC
- New York State Department of Health, Albany, NY
- University of Utah, Salt Lake City, UT
- Indiana University, Bloomington, IN
- Texas Children’s Hospital and Baylor College of Medicine, Houston, TX
Priorities
- To assess and conduct a population-based surveillance of individuals with CHD
- To examine descriptive epidemiology of CHD, survival, health care utilization, and comorbidities over time
- To improve understanding of health outcomes of CHD among public health practitioners
- To estimate age-specific mortality
Component B
Surveillance Period
2020 - 2024
Collaborators
- Emory University School of Medicine and Rollins School of Public Health, Atlanta, GA
- Emory University School of Medicine, Department of Biomedical Informatics, Atlanta, GA
Priorities
- To validate billing codes for CHDs in health care claims data
- To determine best ways to use health care claims for CHD surveillance across the lifespan
Selected Recent Publications
- Severe Maternal Congenital Heart Disease is Associated with Adverse Fetal Outcomes Compared to Valve or Shunt Lesions, Journal of the American College of Cardiology
- Machine Learning and Natural Language Processing to Improve Classification of Atrial Septal Defects in Electronic Health Records, Birth Defects Research
- A Generalized Machine Learning Model for Identifying Congenital Heart Defects (CHDs) Using ICD Codes, Birth Defects Research
- Novel Linkage of the Society of Thoracic Surgeons Database and Hospital Electronic Health Records, Cardiology in the Young
- Racial and Ethnic Disparities in Healthcare Utilization and Mortality by Neighborhood Poverty among Individuals with Congenital Heart Defects, four U.S. Surveillance Sites, 2011-2013, Journal of the American Heart Association
- Anatomic and Physiologic Classification of Adults with Congenital Heart Disease to Predict Adverse Outcomes: Use of Administrative Codes Compared to Clinical Staging, American Heart Journal
Our People
The CHD Team
- Wendy Book, MD, principle investigator, ACHD cardiology; director of the Adult Congenital Heart Center
- Fred Rodriguez III, MD, co-investigator; pediatric cardiologist/adult congenital cardiologist,
Children’s Healthcare of Atlanta & Emory Healthcare - Cheryl Raskind-Hood, co-investigator; research associate professor of epidemiology
- Lindsey Ivey, assistant epidemiologist
- Vijaya Kancherla, PhD, research assistant professor of epidemiology
- Alex Haffner, senior data informatics specialist
Community Advisory Committee
- Children’s Healthcare of Atlanta
- Emory Healthcare, Adult Congenital Heart Center
- Emory Cardiology at Grady Hospital
- Georgia Department of Public Health, Epidemiology Division
- Georgia Department of Community Health, Medicaid Division
- Georgia State University, School of Public Health, Center for Leadership in Disability
- Kids at Heart/Camp Braveheart
- Northside Hospital - Cardiology
- Parents of Patients with CHD
- Patients with CHD
- Piedmont Healthcare, Innovation Program
- WellStar Health