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Congenital Heart Initiative

About the Registry

While nearly 2 million adults in the United States are living with a congenital heart defect, it’s been historically hard to gather significant data on these conditions. That’s why the Heart Research Alliance, Adult Congenital Heart Association, University of California San Francisco and Children’s National Medical Center came together to develop the Congenital Heart Initiative, a patient registry for those with adult congenital heart disease (ACHD).

The registry will collect data from brief surveys sent to enrollees every six months, which will be used to gain a deeper understanding of the experiences of ACHD patients. By reshaping the way that ACHD is understood by both patients and clinicians, the registry can improve the lives and futures of adults living with congenital heart defects. You can learn more by accessing educational sheets for patients and medical providers.

The Congenital Heart Initiative aims to:

  • Understand how to improve the quality of life for adults with congenital heart defects.
  • Improve our understanding of the ACHD population for patients, providers and researchers.
  • Inform future research projects of needs within the ACHD community.
  • Spur innovation within congenital heart disease treatment.
  • Fundamentally change the way America understands and cares for ACHD patients.

Why do we need the Congenital Heart Initiative? The answer is simple: HOPE. Hope for better CHD patient outcomes across the lifespan. Hope for better research. Hope for better patient advocacy. Hope for a better future for adults living with congenital heart defects.

If you are living with ACHD, consider enrolling in the registry! Your experience can hold the key to unlocking a better future for ACHD patients. Learn more by clicking here. You may also click here for a digital toolkit to share the news about the Congenital Heart Initiative with your networks.

The Data is In

March 2022: The first Congenital Heart Initiative report is out! What we hope to be the first report of many that will shine light and characterize the ACHD patient population to drive research and innovation in the field, please find our first annual report through the link below. With 1,072 patients, across 15+ ACHD diagnoses, and participants across the United States and 18 other countries, we’re proud to showcase the initial demographics of the Congenital Heart Initiative. 

View Report