Describing Anxiety for People with Fragile X Syndrome

//Describing Anxiety for People with Fragile X Syndrome

Describing Anxiety for People with Fragile X Syndrome

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?

No

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.

COMPLETE THE ANXIETY SURVEY
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.
View More Opportunities

View All

Purdue Early Childhood Study – PANDABox

6-18 month old boys and girls with the full mutation needed for a research study   Purdue University is conducting a research study to learn about development of infants with Fragile X syndrome. Who can participate?  Boys and girls [...]

Survey: Medical and Mental Needs of Families Living with Fragile X

Adults (older than 18), Males and Females, Families affected by Fragile X Needed for a Survey  Why are we doing this research?  The University of Kansas Medical Center is conducting a survey to learn about the medical and mental health care [...]

Study with Children with Fragile X Syndrome Losing Baby Teeth

Children losing primary (baby) teeth, male or female, Fragile X syndrome needed for a research study Why are we doing this research? Dr. Lawrence T. Reiter, a researcher from the University of Tennessee Health [...]

Rush University FXTAS Exercise Study

Have you been diagnosed with FXTAS and want to participate in an exercise trial? See the below flyer from Dr. O’Keefe’s lab at Rush University for details. View More Opportunites VIEW ALL [...]

Fragile X Premutation Carrier Study at University of Kansas

Individuals ages 50-80 with the FMR1 gene premutation with or without FXTAS are needed for a research study  Why are we doing this research?  The University of Kansas BRAIN Lab is conducting a research study to learn about behavioral [...]

Study: Family Relationships and Parenting of Children with FXS

The UC Davis MIND Institute is currently recruiting study research participants. The study’s goal is to better understand the ways in which characteristics of mothers and fathers and relationships within the family influence the language learning environment of young boys with Fragile X syndrome.

Image Credit: “badfriday4 panic attack” by IdentityTBD is licensed under CC BY-NC-SA 2.0 
By | 2019-10-25T12:25:25+00:00 Aug 21, 2019|Opportunities for families|Comments Off on Describing Anxiety for People with Fragile X Syndrome