CITIZEN HEALTH

Let your medical records do the talking when you sign up for the Citizen Health platform. This is a great opportunity for the CASK community to rapidly gather natural history data with no extra clinic visit or medical exam required. It takes only a few minutes!

Video - Citizen Health Webinar with CASK Gene Foundation

Our Citizen Health webinar recording is now available! Here’s a brief recap of the webinar, and what you’ll see in the recording:

Kristina Hone:

  • shares her daughter’s ultrasound imaging as viewed in the Citizen Health platform

  • talks about how this platform has helped improve her life and her daughter’s care

Kate Haldeman:

  • summarizes the history, purpose, and power of the Citizen Health mission

  • demonstrates how citizen health de-identified data can expedite research

  • explains the current “share for rare” recruitment challenge and sweepstakes incentive

Mequel Bunch:

  • details the security measures for the platform and research study

  • demonstrates the onboarding process and shows how to contact her via chat

  • shows how you can choose to share your contact info with both CASK Gene Foundation and Project CASK

Dr. Konark Mukherjee, PhD, MBBS

  • shares his thoughts on what Citizen Health is offering

  • explains how this real world data can help focus CASK research and improve his work

Video - Citizen Results with Rett Syndrome Research Trust

In this video, you can see how the Ciitizen data services have added value to the research for Rett Syndrome.