Citizen Health Digital Natural History Study
A natural history study follows a group of people over time who have a specific disease, collecting health information in order to understand how the disease develops and changes and how to diagnose and treat it better.
KCNQ2 and Citizen Health
Citizen Health is a platform that enables patients with rare conditions to access all their medical data in one place and accelerate critical research efforts with minimal effort. In partnership with over 80 advocacy partners and 12,000 patients, we’re supporting rare disease patients in using their own health data to improve care and accelerate groundbreaking treatments.
We’re partnered with Citizen Health to build critical natural history studies for our community - no site visits required! Citizen will do the work to collect your comprehensive medical history into your secure digital profile and give you the option to contribute your de-identified data to accelerate research. Help our community unlock the insights hiding in our medical data and make huge leaps in understanding our disease and accelerating treatment options like never before. It just takes five minutes, sign up here today!
Insights from Parents
I gave them permission to pull her medical records which they will anonymize and make available to researchers studying KCNQ2. The really cool thing they're doing is using AI to quickly pull out the relevant data from digitized records so they can find trends, and match up which medications have had success and what symptoms different patients have had. By "crawling" through the data and keeping up with it over time, they'll essentially develop a longitudinal dataset for our small group of patients. I'm pretty excited about the research possibilities and only wish I'd signed up sooner.
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.).
I have been holding on to years of medical records waiting for a chance to use them to help others and support research, bit did not know how.
We now have the opportunity to do so in a safe and anonymous way. Signing up was quick and easy and we have since used Citizen to share our son's records to get second opinions on his on going GI issues.
Citizen Quickstart Video
Use this easy reference to help you get started using your power to shape the future of KCNQ2 patients.
Citizen Health benefits
Participation is completely digital
Collects participants’ medical records from all institutions visited and organizes, digitizes, and summarizes them in a secure online account at no cost to you and under your full control
Having all medical records in one place helps you have a better understanding of your medical history and inform future decisions
Creates a comprehensive “Personalized Disease Summary” that enables quick access to key information and gives a detailed analysis of your KCNQ2 experience
Easily share your records and Personalized Disease Summary to collaborate with your medical team, seek second opinions, and coordinate with caregivers
With your consent, clinicians, researchers and biopharma can access anonymized data to aid in research
You can have a big impact on research with minimal effort
YOU
YOU
are the experts.
can help best tell the story of KCNQ2-related disorders.
Reach out to the KCNQ2 Cure Alliance if you'd like to schedule one-to-one assistance
with the enrollment process or have questions
Citizen offers LIVE Patient Support Office Hours:
every Wednesday from 1:00 - 4:00 PM ET
Zoom Link
ID: 91854018101
Passcode: 278849