Citizen Health Natural History Study

The CSNK2A1 Foundation is conducting a separate natural history study through Citizen Health to accelerate research into Okur-Chung Neurodevelopmental Syndrome (OCNDS).

Unlike traditional survey-based approaches, Citizen Health leverages existing medical records to build a comprehensive picture of the real-world clinical experiences of individuals with OCNDS. Families provide consent, and Citizen Health collects, organizes, and de-identifies medical records to create a valuable dataset for researchers. This approach reduces the time commitment for families while generating powerful information for research and potential therapeutic development.

This initiative complements another key research efforts supported by the CSNK2A1 Foundation: Simons Searchlight Natural History Study. While both are critical to advancing our understanding of OCNDS, they differ in their methods and benefits:

Citizen Health: Builds a natural history of OCNDS by collecting and aggregating existing medical records (~5–10 minutes to sign up)

Simons Searchlight: Focuses on caregiver-reported surveys covering medical, developmental, and behavioral aspects, with optional biological sample submission (~1–2 hours, with annual updates)

In summary, Citizen Health complements Simons Searchlight by focusing on medical record–based data, rather than surveys. Together, these initiatives create a well-rounded ecosystem of data: real-world clinical records, detailed caregiver insights, and cross-study research connections.