Congenital Heart Initiative

Home
Congenital Heart Initiative

Patients, providers and researchers passionate about improving the lives of adults living with congenital heart defects through a patient-powered registry.

30/12/2025

Our "New Year" of research is focused on the topics you told us matter most.

We added three new research papers to our library, and these findings provided unprecedented insights into the lives of over 4,500 adults with .

🔗 Check out these new publications in our library of studies: https://www.congenitalheartinitiative.org/published-studies

08/12/2025

Yesterday, we celebrated 5 years of changing lives through research! 🎂

As Dr. Harrison mentions, the Congenital Heart Initiative would not be possible without the strength and participation of the community.

🎁 Our only birthday wish is that you will enroll in the registry and share our work with your networks: https://www.congenitalheartinitiative.org/ptsd-chd-study

01/12/2025

Joining the CHI registry benefits the community and patients like Alison.

Once you sign up, you may be asked to:
- Answer a few surveys about your quality of life
- Tell us about your medical history
- Check in every four months with any updates

Be a part of a community that brings together patients by registering here: https://www.congenitalheartinitiative.org/

18/11/2025

Our relaunched registry represents a bold vision for the future - one where treatment approaches are informed directly by the experiences of those living with ACHD.

With this new and improved platform, participation is easier than ever, keeping the process simple and confidential. ❤️

If you haven’t already, make sure you re-join as a new user to continue being a part of this important research: https://www.congenitalheartinitiative.org/

Together, we can build a better future for the entire hashtag .

11/11/2025

It has been our pleasure to join the American Heart Association in New Orleans for the 2025 Scientific Sessions. ❤️

We’re especially proud of our leaders who took the stage and helped shape the conversation about by spreading awareness of our efforts.

It’s global gatherings like these where bold cardiovascular science can meet real-world impact.

🔗 If you haven't already, rejoin the new CHI registry to help shape the future of care too: https://www.congenitalheartinitiative.org/

10/11/2025

You hold the power to improve the outcomes for everyone living with ! 🫀
When you share your experience about living with through the new CHI registry, your data informs the future of care for you and future generations.

🔗Register now to help change the way America understands and cares for patients.

28/10/2025

What’s spookier than ghosts, goblins, and ghouls? Missing out on the chance to strengthen the community! 🧡

Don’t wait. Sign up for the Congenital Heart Initiative's registry today and be part of progress and change.

Participation is voluntary, confidential, and only takes minutes every few months. Together, we’re building a future where care is more personalized and effective.

23/10/2025

What an inspiring 1st annual Science of Engagement Study meeting!

patients, providers and researchers joined us for a day filled with storytelling, insight-sharing and networking for improving engagement in congenital heart disease research and care.

Thank you to all who attended and Children’s National Hospitall for hosting! A special thanks to our speakers for leading these meaningful discussions and brainstorms about our future.

📸 Take a look at some of our favorite moments from the day

17/10/2025

What makes the CHI unique is our focus on both clinical data and quality of life measures.

By joining the CHI, you’re not just sharing your story, you’re helping researchers develop better treatments and care for the entire community.

If you’re an adult living with CHD, your participation can:
• Contribute to research
• Help healthcare providers better understand CHD’s long-term impacts
• Drive innovation in treatment approaches
• Shape policies that affect the entire CHD community

For us, it’s not just physicians and scientists determining what matters - it’s leading the way.

Join us or re-register as a new user: https://lnkd.in/eg4VqSfw

29/09/2025

On this , we are proud to reflect on the insights shared at the Cardiac Neurodevelopmental Outcome Collaborative's 13th Annual Scientific Sessions. ❤️ 🌎

Our own Ruth Phillippi, MS, presented on the importance of including adults living with neurodevelopmental disabilities in patient-centered outcomes research. By ensuring every voice is heard, we move closer to equitable care for all hearts.

Learn more about why elevating underrepresented voices benefits us all at: https://www.congenitalheartinitiative.org/

22/09/2025

The Congenital Heart Initiative registry is growing — and evolving.

After over 4,000 participants joined in the first phase, we are now launching our new registry dashboard that gives participants access to:
- Real-time data snapshots
- Insights into survey results
- A clearer picture of how your experience connects with others

If you’ve previously enrolled in this initiative, we invite you to rejoin as a new user and continue shaping the future of ACHD research.
And if you’re new here, we always love to welcome more participants.

👉 Explore these new features and more by signing up as a new user: https://www.congenitalheartinitiative.org/

11/09/2025

The Congenital Heart Initiative Registry is back and better than ever — with a new platform and new features.

If you’ve joined before, we invite you to re-enroll to keep contributing your experience. ✅
If you’re new here, we’d love to welcome you to the community! ❤️

Visit our website to enroll or rejoin today and help shape the future of ACHD care: https://www.congenitalheartinitiative.org/

Address

Website

facebook.com

Alerts

Be the first to know and let us send you an email when Congenital Heart Initiative posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Shortcuts

Want your practice to be the top-listed Clinic?

Country:

City: