We need you to describe anxiety in this survey!

Q: Why are we doing this research?

We need caregivers to carefully describe what they see and hear when they feel someone with FXS is anxious and to describe how it impacts their quality of life. Then we can begin to develop scales or instruments that measure these behaviors. Eventually, we can use them to see if treatments or medicines are working for FXS.

Q: Who can participate?

Who can complete the survey:

  • Caregivers of individuals with FXS, including those who are mosaic.
  • Medical providers and other professionals who treat individuals with FXS.
  • Individuals with FXS who are able to self-determine their anxiety and complete the survey.
  • All ages and locations are eligible.
  • The survey can be completed once for each individual with FXS. So, if you have three children with FXS, you can complete it three times.

Q: What will happen in the study?

The survey will take approximately 15 minutes to complete.

Q: What are the good things that can happen from this research?

We can begin to develop scales or instruments that measure these behaviors. Eventually, we can use them to see if treatments or medicines are working for FXS.

Q: What are the bad things that can happen from this research?

It may be challenging to think about how anxiety affects your child. It might make you sad. Remember that you are helping a lot of people by completing the survey. There may be other risks that we do not know about yet.

Q: Will you/your child be paid to complete this survey?


At a Glance

  • Study Type: Survey
  • Condition: Fragile X Syndrome
  • Participant: Caregiver, professional, or has FXS (see details)

  • Age: All
  • Sex: All
  • Location: Home
  • Travel Considerations: None

Interested in Participating?

Click the button below to begin the survey. If you have any questions, you may contact Jayne Dixon Weber at jayne@fragilex.org.

Our Most Recent Opportunities
If you arrived on this page through a MyFXResearch Portal search, you can close this window and return to your filtered results. Or start a new search here.

Study: Parent-Infant Fragile X Intervention (PIXI)

RTI International and the University of North Carolina at Chapel Hill are conducting an early intervention study to learn about the best ways to support early development in infants identified with the full mutation of Fragile X. Babies 0–9 months old with the full mutation, and their caregivers, may be eligible to participate.

Study: Our Fragile X World Registry

Our Fragile X World collects data from families using online surveys and in-person studies. Topics covered include sensory or behavioral challenges, health care experiences, and the impact of Fragile X on families.

Fragile X Premutation Carrier Study at USC

The University of South Carolina is conducting a research study focusing on the range of language, social, and cognitive features that may be associated with variations on the FMR1 gene. Women age 35-75 who are carriers of the Fragile X premutation may be eligible to participate.

Parent Survey: Children’s Behavioral Strengths and Challenges

The MIND Group at the University of Minnesota is conducting a survey for parents of children with Fragile X syndrome to learn about how genetic and neurodevelopmental differences impact behavioral strengths and challenges. Parents of 3–17 year old children living with Fragile X are eligible to participate.

Image Credit: “badfriday4 panic attack” by IdentityTBD is licensed under CC BY-NC-SA 2.0