Citizen Health
Accelerate cures, improve daily care, and power research
Citizen Health
Accelerate cures, improve daily care, and power research
Advancing KCNQ2 Research through Partnership with Citizen Health
KCNQ2 Cure has been at the forefront of advancing KCNQ2-related disorders (KRDs) research. This partnership with Citizen Health takes our efforts to the next level by creating a comprehensive digital natural history study that puts patients and caregivers at the center of research.
We are inviting any individual impacted by KCNQ2-related disorders to join the Citizen Health platform. Your participation is crucial in building a comprehensive digital natural history study that truly represents our community’s experiences.
Your five-minute sign-up could help accelerate discoveries that lead to improved care and treatments for KCNQ2-related disorders. Every individual who participates brings us closer to breakthroughs that could change the future for our entire community.
The more individuals who join, the stronger our dataset becomes – helping researchers identify meaningful patterns in how KCNQ2-related disorders affect daily life and potentially opening doors to new treatment approaches.
Why This Matters
Traditional natural history studies often require site visits, extensive paperwork, and significant time commitment from those already managing complex care. While these are important, through this digital approach, we can easily gather comprehensive data across our community:
- Power our digital natural history study so researchers can gain access to comprehensive, longitudinal data that reflects real-world experiences
- Impacted individuals can contribute to research without additional appointments or travel
- Your medical information works harder for you and the entire KCNQ2 community
Citizen Health works directly with pharmaceutical companies and has a track record of accelerating drug development and clinical research. By centralizing real-world patient data, Citizen Health will help drive progress in treatment strategies specifically for KRDs.
Your participation means:
- Simplified access to all your medical records
- Opportunities to contribute to cutting-edge scientific studies
- A secure and patient-controlled way to share health insights with researchers advancing treatment options
Everyone who signs up plays a critical role in advancing research.
Quick Start Video
Your participation is crucial to the success of this initiative. Sign up with Citizen Health by visiting our page and creating your account. (It takes just 5 minutes!) We have linked a step-by-step video tutorial to guide you through the process and show just how easy it is.
If you have records you would like to upload, here is a 3-step guide to help you.
Insights from Parents
How would signing up for Citizen benefit you right now? You would have access to your child’s medical records in one place. Many hospitals discard records after a while so this ensures you always have your child’s records. Plus, you can share documents for second opinions and consults (gut, sleep, pain, vision, etc.).
~ Cammy Cook, KCNQ2 mom
KCNQ2 Cure is proud to partner with Citizen Health to create a secure and patient-driven pathway for advancing KCNQ2 research. This partnership empowers families to take control of their health data and actively contribute to studies that could shape the future of KCNQ2 therapies. Together, we are transforming data into discovery.
~ Scotty Sims, Executive Director, KCNQ2 Cure Alliance