Researchers at Teachers College at Columbia University are conducting a survey to learn about the impact that the COVID-19 pandemic has had on multiple aspects of the lives of people with Fragile X Syndrome. We want to see how the Fragile X community specifically was impacted so that we can have a more focused plan of action for helping these families. The overall goal of this survey is to distribute our findings to medical professionals so that they can see what gaps have been created in their practices from the pandemic. 

About the Survey

Who can participate?

Parents or guardians of a person with a full mutation FXS, with and without mosaicism may be eligible to participate 

  • The parent/ guardian must live with the person with FXS at least 80% of the time.  
  • The person with FXS must be a student for the entire 2020 calendar year, this includes 2020 spring and fall.  
  • “School-aged” includes preschool through high school graduation (age depends on your state’s cutoff point for school). This does not include college students or adult programming. 

You may complete the survey more than once if you have more than one child who fits the criteria. 

What will happen in the study?

If the individual qualifies and decides to be in this research study, they will take a survey that consists of 9 sections (demographics, school settings, therapy/services, behavior, medication, health visits, daily living skills, mask use, and free response) with 2-6 questions in each section.  

The survey should take about 30-45 minutes to complete. The survey may be completed in more than one sitting, but must be completed within a week of starting the survey. 

I am interested, now what? 

If you’d like to learn more or apply for this opportunity, please fill out the form here and we will send you the survey link.

For questions, please reach out to Hailey Silver at has2183@tc.columbia.edu 

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