Congenital Heart Initiative

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

23/05/2025

Next steps for studying maternal health and CHD include focusing on improving care coordination, provider education, reproductive health access, and mental health support. Long-term goals include expanding telehealth, addressing disparities, and improving access to specialized care. More info:https://www.achaheart.org/media/4396/chiannualreport2024.pdf =12
Adult Congenital Heart Association

12/05/2025

Pregnancy with CHD presents unique challenges. Over the past year, we’ve engaged patients, conducted surveys, and hosted focus groups to shape a roadmap for better care. Check out the Research page on our new website for more info! https://www.congenitalheartinitiative.org/progress-research-studies
Adult Congenital Heart Association

09/05/2025

Adults with CHD face higher rates of and poorer outcomes from infective endocarditis. A new study using PCORNET and CHI registry data is looking at prevalence, antibiotic use, and outcomes to improve prevention and care. Stay tuned for updates as the study progresses! Learn more: https://brnw.ch/21wSxbi
Adult Congenital Heart Association

01/05/2025

Looking at participants' ages provides insight into how CHD outcomes evolve over time. Currently, the majority of registry participants are between 26 and 45 years old, but engagement across all age groups is rapidly increasing. Learn more:https://www.achaheart.org/media/4396/chiannualreport2024.pdf
Adult Congenital Heart Association

25/04/2025

Looking at participants' ages provides insight into how CHD outcomes evolve over time. Currently, the majority of registry participants are between 26 and 45 years old, but engagement across all age groups is rapidly increasing. Learn more: https://brnw.ch/21wSdEU
Adult Congenital Heart Association

24/04/2025

Adults with CHD face higher rates of and poorer outcomes from infective endocarditis. A new study using PCORNET and CHI registry data is looking at prevalence, antibiotic use, and outcomes to improve prevention and care. Stay tuned for updates as the study progresses! Learn more:https://www.achaheart.org/media/4396/chiannualreport2024.pdf =16

04/04/2025

Living with CHD comes with its unique set of challenges, and the right coping skills can make all the difference. This webinar from Adult Congenital Heart Association shares strategies to help navigate daily life and enhance wellbeing with . Watch here:

The directory provides information, resources, and tools for ACHD patients who might experience barriers when accessing recommended specialized care.

28/03/2025

We are examining how racial disparities affect health outcomes for people with CHD. Since May 2022, our focused efforts have led to a more diverse participant pool. Stay informed and explore our annual report for more details:https://www.achaheart.org/media/4396/chiannualreport2024.pdf
Adult Congenital Heart Association

21/03/2025

A new CHI study, led by Dr. Harrison and funded by the Adult Congenital Heart Association and Meil Family Foundation, explores the psychological impact of CHD — including factors that build resilience and how experiences like hospital stays, surgeries, and social stigma contribute to trauma.

Participation involves two short surveys about mental health and medical history. No questions are mandatory. Patient input will help improve support and care for those living with CHD. Watch the video to learn more:

Did you know that adults with congenital heart disease (ACHD) may be at higher risk for post-traumatic stress disorder (PTSD)? Researchers partnering with th...

14/03/2025

We’re working on new ways to connect with and involve people with heart defects and learning or developmental challenges in research. Travel and accommodations are covered for in-person meetings on May 6 and June 27 in D.C., with limited spots available. Fill out the survey to let us know you’re interested: https://redcap.uits.iu.edu/surveys/?s=ELFFTPFFAHTCKEKW

Adult Congenital Heart Association