The CHI will give researchers, health care providers and patients a deeper understanding of adult congenital heart disease, inform future research projects, and spur innovation. Your voice will help us improve healthcare outcomes and quality of life for people with CHD!
We are excited to announce the CHI has officially launched its new and improved registry! Over the past year, we’ve updated the platform to give you real-time data dashboards, snapshots of survey results, and insights into how many participants share your diagnosis. Additionally, users can now meet the team, explore current research, and access annual reports through the updated website. These new features are only available through the updated registry, so all participants (new and returning) need to sign up again as a new user.
If you are an adult living with CHD, please consider enrolling in the registry!
Check out this video for more information:
FAQ About the Updated CHI (August 2025):
Q: Why do I have to “rejoin”? Why can’t I use my old account information?
A: The new CHI registry is on an entirely different platform than last time, which means that you will need to sign up and join as a new participant. Just click on “New user registration” to sign up using your email and create a new password. Don’t worry, you won’t be in the system twice, since your old profile is not linked to this platform.
Q: Wait, what about my previous survey responses and all that information I’ve provided in the past?
A: We still have it! Rest assured, your previous survey data is securely stored and is still being used for data analysis in combination with the relaunch data! We just couldn’t transfer your previous data to a new platform without an immense amount of work and time, and we didn’t want to delay things any further than absolutely necessary.
Q: Why do I have to sign in and then get a code sent to my email address?
A: The registry uses a two-factor identification process as an added layer of security and peace of mind. It’s an extra step but we hope the security it offers will make up for any added time required to log in.
Q: I’m trying to join but my cardiology care center isn’t listed (or, I don’t have a cardiology care center) – what do I do?
A: Cardiology care centers are listed alphabetically – if your center isn’t listed, please scroll down the list until you come to “Other” and select that option. You can then enter the name of your care center.
Q: Can other people see who I am or where I live or things like that?
A: NO! While registry users can see summary-level data on the various dashboards, NO ONE has access to your individual information!
If you have additional questions, please email: ACHDResearch@childrensnational.org.
The CHI’s Third Annual Report is Here!
The CHI’s third annual report sheds further light on what it means to live with CHD. The report explores the composition of the CHI—such as CHD diagnoses and gender, racial, and ethnic identities—while covering areas like employment and insurance. It also features CHI sub-studies across different topics including maternal health, specialized ACHD care, mental health, and more.
Click here to explore this year's annual report! (Last year’s second annual report can be found here.)
CHI Videos: Voices of the Community
Hear from CHD patients, providers, and our President/CEO on the importance of the CHI registry:
