Our Partners

WHAT IS THE CONGENITAL HEART INITIATIVE (CHI)?

The Congenital Heart Initiative (CHI) is the first global patient-powered registry for adults with congenital heart disease (CHD). The registry unites patients, providers and researchers, yielding data that spurs new research, informs the future of care, and improves quality of life for people with CHD.

WHY IS THE CHI IMPORTANT?

Adults with CHD face unique health challenges. Patient-centered research is essential to improving care. The CHI serves as a platform for patients to share their information, helping experts answer key questions to evaluate and address unmet needs. Your data will help to enhance the lives of others with CHD to improve care access, patient advocacy and health outcomes!

WHY JOIN THE CHI?

You will be contributing to crucial medical research that directly informs future research to improve medical care for you and future generations. You’ll also join a community of other adults with CHD in a space that brings patients together to learn, engage, and build connections!

The CHI is currently exploring new research areas, including neurocognitive disabilities, care coordination models in pregnancy, physical activity interventions, gaps in care, home-based delivery of mental health support, and more.

How can you participate?

Anyone living with CHD can sign up for the registry. Participation is voluntary and confidential!

CHI enrollment is on pause and will be back soon. Please reach out to ACHDresearch@childrensnational.org with your full name to submit interest in future participation!

  • The CHI enables patients to share their ACHD experiences so providers can better understand not just the heart-related impacts of our diagnosis but also how it affects a patient in all other areas.

    Jennifer Cortes, ACHD Patient

  • Living with a CHD involves nuances that medical records and research alone can't capture. The CHI offers crucial insights that were previously missing.

    Ken Woodhouse, ACHD Patient

  • As adult patients, we want our experiences to matter. Our participation builds a network for millions now and in the future.

    Ruth Phillippi, ACHD Patient

  • As a person of color with CHD, participating in the CHI lets me share my health story, support others, and show the younger generation that they can grow up to live normal lives.

    Alison Gill, ACHD Patient

  • Patient-centered research organizations, like the CHI, have the greatest ability to lay the foundation for future breakthroughs.

    Matt Lewis, Cardiologist

JOIN THE CHI TO CONTRIBUTE TO FUTURE CARE

Once you sign up, here is how we may ask you to contribute:

THE CONGENITAL HEART INITIATIVE AIMS TO:

  • Understand how to improve the quality of life for adults with congenital heart defects.

  • Provide a better understanding of the population to patients, providers, and researchers.

  • Inform future research projects of the needs within the CHD community.

  • Spur innovation within CHD management.

  • Fundamentally change the way America understands and cares for ACHD patients.

Tell us about your medical history.

Answer a few surveys about your quality of life.

Check back in every four months to let us know how you are feeling.