National guidelines for adult congenital heart disease updated for the second time - Children's National

The American College of Cardiology (ACC), the American Heart Association (AHA), and several other leading medical associations, have collaborated on a guideline to help care providers manage congenital heart disease in adults. The updated guideline replaces a previous iteration issued in 2018 and draws on research published from 2017 to 2024.

"When the first guideline came out in 2008, it served to educate providers that adults with congenital heart disease have unique recommendations for their care, said Anitha John, MD, medical director of the Washington Adult Congenital Heart Program at Children's National Hospital, and co-author of the new guideline. "This third iteration delivers a series of important additions and updates that will guide our practice patterns and continue to improve quality of life for our patients."

What it means

The guidelines are created based on a rigorous process that includes literature reviews, a classification system for recommendations and specific levels of required evidence for inclusion.

The new version adds evidence-based guidance in several key areas:

• The vital role of clinicians with specialized expertise to guide care
• Updates regarding the importance of mental health assessment and support
• More robust physical activity recommendations
• Additional insight into managing care for pregnancy or people with congenital heart disease who wish to become pregnant
• Clinical recommendations related to:
  • Heart failure
  • Treatment approaches for specific types of heart defects

Why it matters

Congenital heart disease is the most common birth defect. As treatments for congenital heart defects have improved, children with these conditions are living long into adulthood. Today, nearly 2 million adults in the United States are living with a congenital heart defect - more adults than children.

"It was an honor and privilege to be part of the writing group for this iteration of guidelines," noted Dr. John. "It's a testament to how far we've come that this latest version was able to draw on a new, significant body of evidence aligned with many of our patients' own priorities for their care. That's the magic of patient-centered research - findings from our studies can improve clinical knowledge about what matters most to the people we care for."

Dr. John and her team at Children's National led the Congenital Heart Initiative (CHI), a study focused on developing the first patient-powered registry for adults with congenital heart disease. Registry data and participants contributed evidence and insight on topics people with congenital heart disease identify as important, including pregnancy, neurodevelopmental disorders and mental health.

Read the AHA press release: ACC/AHA issue new guideline on managing congenital heart disease in adults

Read the full guideline: 2025 ACC/AHA/HRS/ISACHD/SCAI Guideline for the Management of Adults With Congenital Heart Disease: A Report of the American College of Cardiology/American Heart Association Joint Committee on Clinical Practice Guidelines