Team Titin is thrilled to announce a new partnership with Citizen Health!
Citizen Health is a platform designed specifically for individuals managing rare and complex conditions like TTN (titin) – related muscle and heart disorders. Their mission is simple: to empower patients to drive their care and research through their own health data and accelerate treatments.
Why are we partnering with Citizen Health? This partnership brings a revolutionary tool to our community that offers several major benefits outlined below.
Benefits for You Today – While your participation helps build a better future for all families, there are immediate benefits for you:
Centralizing complex medical histories with all medical records in one place
No more carrying binders to appointments or struggling to remember details from past evaluations. Citizen Health securely organizes your complete medical history, accessible whenever you need it. Care for complex conditions typically involves multiple specialists – developmental pediatricians, neurologists, cardiologists, therapists, and more. Citizen Health brings these records together, giving you or your care team a complete picture of your medical journey while creating a comprehensive dataset for researchers.
Your Personal AI Health Advocate
Before your data can help researchers, it first helps YOU. Ask any question about your medical history and get instant, more comprehensive answers based on YOUR records. You might see patterns you’ve been missing. Track progress with more precision. Prepare for appointments with data-backed insights.Citizen Health’s AI Health Advocate can instantly answer questions about your your complete medical history:
- “What side effects appeared after medication changes?”
- “Show me all therapy assessments in one view.”
This AI can remember details from appointments, tests, and treatments—transforming overwhelming medical complexity into clearer, actionable insights.
Revenue Sharing
Through Citizen Health’s revenue-sharing model, if your de-identified data contributes to revenue-generating research, you receive compensation – recognizing the value of your experiences. Over $1,000,000 has already been distributed to participating patient advocacy groups and families.
Your Data Can Accelerate Treatment Development
One of the biggest hurdles in rare disease research is a lack of centralized data. When information is scattered across different hospitals and paper files, researchers can’t see the full picture of Titinopathy. By joining Citizen Health as an advocacy partner, you can change that.
How Your Journey Can Drive the Next Wave of Treatments
Your unique experiences and medical history are vital keys to unlocking better treatments, more effective support systems, and deeper understanding that benefits the entire community.
Turning Individual Experiences Into Collective Progress
Collecting enough real-world data can help researchers identify patterns and develop interventions.
Today, advances in data science, genetics, neuroscience, and AI offer unprecedented opportunities for understanding conditions like Titinopathy. However, most research captures only small samples of the affected population, and valuable real-world experiences rarely make it into research datasets. Medical records containing critical information remain scattered across multiple specialists—making it nearly impossible for families to see the complete picture of their journey.
This is where Citizen Health and your participation can make a profound difference.
How Your Data Powers Breakthroughs
By joining Citizen Health, you become part of a groundbreaking approach to accelerating progress for Titinopathy. By creating comprehensive digital natural history studies, researchers can better understand how complex conditions present and progress over time, identify potential treatment targets, recognize which approaches work best, and design more effective clinical trials leading to new therapies.
Everyone that joins exponentially increases the value of the dataset. Your participation doesn’t just add one more story – it strengthens connections and patterns visible across the entire community.
Getting Started is Easy
Joining Citizen Health takes just 5 minutes:
- Create your secure account
- Provide your provider information, year-over-year, and including hospitalizations
- Let Citizen Health collect and centralize your records (For US residents, non-US residents can upload documents directly into the platform)
- Choose if you want to opt-into research
From there, Citizen Health collects and/or organizes your medical records. There are no appointments to attend, forms to complete, or complex procedures to navigate.
Frequently Asked Questions
Q: Is the citizen health platform available to users who do not receive their care in the US?
A: Yes, the Citizen Health platform is available to users globally who do not receive their care in the US. For our international families – we want everyone to benefit from this tool! While Citizen Health cannot currently automate record collection outside of the US, you can still create an account and upload your own medical records.
Q: How long does it take to sign up?
A: Creating your account takes about 5 minutes. After that, Citizen Health does all the work to collect your medical records (For US residents, non-US residents can upload documents directly into the platform).
Q: Is my data secure?
A: Yes. Citizen Health prioritizes patient privacy with HIPAA-compliant storage, industry-leading encryption, and strict data security protocols. You can be confident that the health information is protected and only shared according to your preferences.
Q: Is your AI Advocate medical advice?
A: No. 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.
Q: How should I answer the sign up question, What is your primary diagnosis?
Members of Team Titin normally select one of these diagnoses:
- TTN-related heart condition
- TTN-related muscle condition
- TTN-related heart and muscle condition
- Predisposition to a TTN-related heart condition
This helps us group you with similar patients. You can share important symptoms and secondary diagnoses later.
Q: What if we see multiple specialists?
A: That’s exactly why Citizen Health is so valuable! For US residents, the platform collects records from all your healthcare providers and organizes them in one place, creating a comprehensive picture that’s valuable both for you and for research.
Every breakthrough begins with families like yours sharing their experiences. Together, we can turn individual challenges into collective progress—creating a future with better understanding, more effective treatments, and improved support for folks with complex conditions.
We are so excited to bring this resource to the Team Titin family. Let’s take control of our health data, together!
This short video explains about the Citizen Health platform: Improving health care, driving treatments | Citizen Health