Congenital Heart Initiative

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Congenital Heart Initiative

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

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/

04/08/2025

Re-enroll and be a part of a brighter future for ACHD patients.

https://www.congenitalheartinitiative.org.

We’ve upgraded the platform with a renewed commitment to driving better outcomes for the ACHD community.

Your voice matters! Join us in shaping what comes next. ❤️

09/06/2025

We’re still looking for ACHD patients with developmental disabilities to help shape the future of CHD research.

✅ 7–10 individuals with moderate to severe developmental disabilities
✅ 3–5 individuals with mild disabilities (like high-functioning ASD or ADHD)
🗓 Washington, D.C. | June 27 OR June 30, 2025
✈️ Travel and accommodations covered

Join a creative, supportive session with leading doctors to share your story and help make research better for everyone.

🖊 Sign Up Here: https://redcap.uits.iu.edu/surveys/?s=ELFFTPFFAHTCKEKW

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