Citizen Health

How To Get Started

Join in now with this simple registration so you don’t miss any chance to help with advancing research for STXBP1-related disorders.

For over four years, Citizen Health (formerly known as Ciitizen) has partnered with the STXBP1 community and the STXBP1 Foundation to collect and organize clinical data from past medical records into a dataset that helps further understand STXBP1 and supports ongoing research.

As of January 1, 2026, there are 153 STXers enrolled on the platform. From our community’s participation, the information gathered has contributed to research articles including studies on clinical and developmental outcomes.

We have other exciting research efforts coming up with Citizen Health including the launch of their AI Advocate.

About Our Partner

Citizen Health is a natural history study that utilizes information collected in electronic medical records. It requires no in-person visits or phone calls. In the US, Citizen Health will collect records for participants. In other countries, medical records must be obtained by the participant and uploaded; records must be in English.