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Understanding
Okur-Chung Neurodevelopmental Syndrome

a logo for the csnk2al foundation

Understanding
Okur-Chung Neurodevelopmental Syndrome

Join Citizen Health

CSNK2A1 Foundation partners with Citizen Health to build high-quality natural history data in a fraction of the time. Researchers and pharmaceutical companies have already used data from Citizen Health to submit Investigational New Drug (IND) filings with the FDA. This is an incredible opportunity for our community to accelerate research. 

  • Access medical records in one place
  • Easily share medical records
  • Gain more control and understanding of health information
  • Citizen Health is and always will be 100% free to patients
  • Citizen Health is currently available for patients receiving care in the U.S.

How to get involved

Registering takes only a few minutes, and the Citizen Health team will collect all your or your loved one’s medical records. You will receive full access to the records through your personal portal and can share them with whomever you choose. Generating data for our natural history studies on Citizen Health doesn’t require any clinical visits. The data will be extracted from your existing medical records, de-identified for your privacy and protection and, with your consent, organized to share with researchers and pharmaceutical companies. This service is offered to patients for free.


Our goal is to enroll 100 families by the end of 2025. We hope that you will be a part of the first 100 game-changing families for OCNDS research.

Steps

Gather your driver’s license or government ID

To sign up as a caregiver, you’ll need a picture of your driver’s license or government ID to confirm your own identity. If your loved one is over the age of 18, you will need guardianship papers.

Sign-up via this link:

Visit citizen.health/partners/csn2ka1 to get started today.

Enter the doctors and hospitals you have visited

Choose from a dropdown menu to enter all the doctors and hospitals where you have received care. If you don’t see one listed, let us know and we’ll add it.

Choose to engage in research

You have the choice to share your de-identified data with academics, researchers, and pharma to save time getting to potential treatments.

Treated outside of the US?

While we currently cannot collect medical records for international patients, we will notify you and your advocacy group when an offering is available.

Watch this short video to learn how easy it is to sign up for Citizen Health!

Questions?

Check out the FAQ document or

Visit Citizen Health Support via one of the following:

Email: support@ciitizen.com


LIVE Chat: Monday - Friday from 9 AM - 5 PM ET


Schedule a call: https://calendly.com/cii-support/30min

View Accessible Patient FAQ Document Here
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