Your advocate for research, care, & community

The SADS Community Registry on Citizen Health—where your heart journey finds expert guidance, contributes to breakthrough research, and turns questions into clarity.
Get early access

Early access for the first 300 people

When our community unites, we’re a voice for change. The SADS Foundation and Citizen Health now amplify that voice through technology—delivering personal guidance for navigating care, while accelerating research. Protected through HIPAA-compliant cloud services with end-to-end encryption.
Including people with:
Long QT Syndrome  |  Brugada Syndrome  |  ARVC (also known as ACM)  |  CPVT  |  HCM  |  DCM  |  Wolff-Parkinson White  |  Timothy Syndrome  |  And other genetic heart conditions!

Unlocking insights for you. Unlocking breakthroughs for all.
All on one platform.

First, we centralize everything

Our platform brings every record—cardiology, EP, genetics, labs, and more—into one secure location. Your health info is organized, searchable, and at your fingertips. It can help you prepare for appointments, learn more about your genetic testing results, and make decisions with your team.

Illustration of a user profile page

Then, answers about YOUR journey

With AI advocate, ask questions like:  “What happened after I changed my medication dose?” or “How has my ejection fraction trended?” Track treatments, QT intervals, PVC burden, and symptoms, get summaries for new specialists, and surface key questions you can ask your care team. Private, secure, and personal to you.

All while driving forward research

Many patients, parents, and caregivers want to do more than manage their condition: they want to make care better for the next person. With one click, your de-identified data adds to our community’s collective knowledge. Together, we’re building real-world evidence that could accelerate discoveries, improve risk assessment, and ultimately enhance care.

New Feature

Powering the future of genetic heart disease care

Your AI Advocate tool helps you make sense of your condition, providing personalized guidance for navigating your care—from early questions, to tracking testing trends, or helping you prep for an appointment. If you choose to contribute to research, your de-identified data joins a collective resource that could help accelerate discoveries for heart conditions like yours.

Get personalized guidance for navigating care and add your experience to a resource built for our community’s future.

* These are samples for demonstration purposes. See disclaimer below.
Special invitation
Be one of the first 300 patients to complete your profile and help shape the SADS Platform.
Get early access now

Private. Secure. Personalized for you.

Make sense of your treatment plan, control your data—and move forward with confidence.
Private
You own your data completely. Your records are yours to view, download, or remove at any time.
Secure
HIPAA-compliant cloud services securely maintain information, and all data is encrypted locally and on AWS.
Personalized
YOUR journey powers YOUR insights. Get answers pulled from your personal health records.
Power your journey

A New Way Forward

What if getting the personalized medical support you need for day-to-day life could also advance science that changes the field? When you sign up, you contribute to:
Understanding why some people with genetic heart conditions have higher risks or more symptoms than others
Identifying which treatments work best for specific gene variants
Accelerating development of targeted therapies
Building the evidence base for better care guidelines
Surfacing insights about how heart genes can affect other systems, like the GI system or the brain

Start now
A phone showing the Citizen Health AI Advocate interface on the screen. The screen reads "What can I help you with today? You can try one of these ideas or you can ask something else."

Your insights today can transform science tomorrow.
Take 5 minutes. Change the future for hearts like yours.

Our Community Registry offers a new path—where you have full access to your health data, and your questions spark discoveries. Your experience matters—and your participation can accelerate the research that shapes tomorrow. Five minutes to begin. A future of possibilities.
Join the first 300

*

The responses shown are simulated samples for demonstration purposes only. When you use AI Advocate, it provides personalized insights based on your actual medical records. AI Advocate is designed to help you understand and organize your medical information but does not provide medical advice, diagnosis, or treatment recommendations. Always consult with your healthcare provider before making any medical decisions. Your medical information remains private and secure within Citizen Health, and is not shared with third-party AI companies or used to train their algorithms.