Incredibly Important Surveys for all FOXG1 parents to take!
As a community, we are accelerating discovery of new treatments and therapies for FOXG1 syndrome!
One way we are doing this is by launching validated surveys, which will give us critical data for clinical trials.
These surveys allow us to measure how signs and symptoms of FOXG1 syndrome change over time, including measures of sleep, development, behavior, and communication. They also ensure the voices and experiences of our community are considered.
We need all FOXG1 parents/caregivers to take these surveys every 3 months. They’re quick and simple. Some are just a few questions and some require a little more time (approx. 20 minutes).
Please complete these surveys he day we announce them, as it is very important all parents answers are within a systematics time frame.
After you complete the surveys, we will set the timer and remind you to refresh your answers in three months. We will do our best to make this easy and seamless.
We are all in this together! While these surveys may seem simple, they are so important when it comes time for designing effective clinical trials and approving candidate therapies.
Please complete the surveys found right in your child’s/children’s Dashboard in the new FOXG1 Patient Data Center.
Example of your child's Survey page
When it is time to take the surveys, you will see a blank circle above the survey name.
After you complete each survey, you will see a check mark in the circle.
We will clear the check mark every three months when it is time to update your answers.
Don't worry, we will send reminders by email, text, and on our FOXG1 Parents Connect Facebook page.