April 15, 2021
Here are our introductory comments:
If you have a child with SYNGAP1 that is enrolled in the Ciitizen Digital Natural History Study, we are thrilled to let you know that we are doing our first study built on the Ciitizen platform. A company who has a product that may help our kids, and has shown promising results in another country, is looking to understand if they can do a study with the same product here. This study, the SSB30, will lay the foundation for this next study. Essentially we are asking you to do two surveys and keep a 30 day seizure diary. These results will stay in your Ciitizen account and you will receive a gift card for your participation. Please join us to learn about the study and get any questions answered.