The Congenital Heart Disease Project to Understand Lifelong Survivor Experience.
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Welcome to CHD PULSE!

The Congenital Heart Disease Project to Understand Lifelong Survivor Experience

Congenital heart disease (CHD) is the most common type of structural birth defect, affecting almost 1% of all children. In prior decades CHD was often considered fatal during infancy or childhood, but with tremendous advances in pediatric cardiology and cardiac surgery, at least 85% of patients now survive to adulthood. Based on the most recent estimated and expected survival rates there are over 2 million persons with CHD in the United States, with more than half of these being adults.

With this greater survival comes a need to better understand the outcomes of this unique population. The aim of CHD PULSE is to conduct surveys among adults born with heart defects to learn more about the effects that living with congenital heart disease has on multiple domains of life, with the goal of eventually improving those outcomes. We invite you to learn more about this project and, if eligible, to participate in our survey.


Recognizing the need to better understand the long-term outcomes of those with CHD, researchers from centers in the Pediatric Cardiac Care Consortium are reaching out to adults who have a history of cardiac intervention at a participating center to learn directly from them about their lifelong outcomes. The Pediatric Cardiac Care Consortium is the longest standing registry of outcomes for pediatric cardiac interventions in the world. This project is the latest effort of the consortium to work to improve the lives of those with CHD.

At the conclusion of this study, we will better understand the long-term outcomes for individuals with CHD in the US and will have identified important risk factors associated with those outcomes. Furthermore, through this study, we will have created the largest known cohort of adults with CHD in the US. CHD PULSE will then be well suited to follow this cohort over time to provide a comprehensive picture of medical outcomes and quality of life of this generation of survivors with CHD.

Participating Sites

Researchers from these centers are collaborating on this important project. Patients from those centers who meet eligibility criteria have been invited to participating in CHD PULSE.

Map of participating sites


Important findings from this project will be posted online and will also be shared with participants via e-mail. If you would like to sign up to learn more about new findings as they become available, please contact us.


Recruitment for CHD PULSE has closed. Thanks to the over 3000 individuals with congenital heart disease and their 300 siblings for participating!

If you did not receive an invitation to complete a survey but would still like to share your experience, e-mail us for a survey invitation.


Many thanks to our partners who have supported this important work:

Contact Us

If you would like learn more about this project or be added to our mailing list, please send us an e-mail at:


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