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Author Notes:

Jill Glidewell, MSN, MPH, Centers for Disease Control and Prevention, National Center on Birth Defects and Developmental Disabilities, 4770 Buford Hwy, MS S-106-3, Atlanta, GA 30341. Email: jill.glidewell@cdc.hhs.gov

The authors would like to thank all collaborators from each participating site and CDC: Lindsey Duca, Christopher Rausch, Lisa McKenzie, Grace Ryan, Karen Chiswell, Tracy Spears, Lauren Sarno, Timothy Hoffman, Karl Welke, Michael Walsh, Trenton Hoffman, Carol Hogue, Rusty Rodriguez, Daphne Hsu, George Lui, Alissa Van Zutphen, Ali Zaidi, Sergey Krikov, Matthew Reeder, Kevin Whitehead, Bobby Lyles, Regina Simeone.

The authors would also like to thank the Intermountain Healthcare’s Adult Congenital Disease Program and all institutions that contributed data to the project.

The authors have reported that they have no relationships relevant to the contents of this paper to disclose.


Research Funding:

Centers for Disease Control and Prevention, Grant/Award Number: CDC-RFA-DD15-1506.


  • Science & Technology
  • Life Sciences & Biomedicine
  • Cardiac & Cardiovascular Systems
  • Cardiovascular System & Cardiology
  • ACHD

Individuals aged 1-64 years with documented congenital heart defects at healthcare encounters, five US surveillance sites, 2011-2013

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Journal Title:



Volume 238


, Pages 100-108

Type of Work:

Article | Post-print: After Peer Review


Background: Many individuals born with congenital heart defects (CHD) survive to adulthood. However, population estimates of CHD beyond early childhood are limited in the U.S. Objectives: To estimate the percentage of individuals aged 1-to-64 years at five U.S. sites with CHD documented at a healthcare encounter during a three-year period and describe their characteristics. Methods: Sites conducted population-based surveillance of CHD among 1 to 10-year-olds (three sites) and 11 to 64-year-olds (all five sites) by linking healthcare data. Eligible cases resided in the population catchment areas and had one or more healthcare encounters during the surveillance period (January 1, 2011-December 31, 2013) with a CHD-related ICD-9-CM code. Site-specific population census estimates from the same age groups and time period were used to assess percentage of individuals in the catchment area with a CHD-related ICD-9-CM code documented at a healthcare encounter (hereafter referred to as CHD cases). Severe and non-severe CHD were based on an established mutually exclusive anatomic hierarchy. Results: Among 42,646 CHD cases, 23.7% had severe CHD and 51.5% were male. Percentage of CHD cases among 1 to 10-year-olds, was 6.36/1,000 (range: 4.33-9.96/1,000) but varied by CHD severity [severe: 1.56/1,000 (range: 1.04-2.64/1,000); non-severe: 4.80/1,000 (range: 3.28-7.32/1,000)]. Percentage of cases across all sites in 11 to 64-year-olds was 1.47/1,000 (range: 1.02-2.18/1,000) and varied by CHD severity [severe: 0.34/1,000 (range: 0.26-0.49/1,000); non-severe: 1.13/1,000 (range: 0.76-1.69/1,000)]. Percentage of CHD cases decreased with age until 20 to 44 years and, for non-severe CHD only, increased slightly for ages 45 to 64 years. Conclusion: CHD cases varied by site, CHD severity, and age. These findings will inform planning for the needs of this growing population.

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This is an Open Access work distributed under the terms of the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License (https://creativecommons.org/licenses/by-nc-nd/4.0/rdf).
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