Studies

Our Fragile X World collects data from families using online surveys and in-person studies. The studies cover topics such as sensory or behavioral challenges, health care experiences, and the impact of fragile X on families.

 

Sign Up for the Our Fragile X World Registry

Taking part in a study is one way you and your family can help support our work. That is why we created the Our Fragile X World registry. This registry is how we let families know when they can take part in a study.

Not in our registry yet? If you would like to know when you can take part in a study, please consider signing up for our registry. Signing up means taking an enrollment survey to tell us more about yourself and your family.

  

Not sure if you have signed up already? Contact us.

CURRENT STUDIES – NOW OPEN

Preferences for the Use of Medical Records in Research Survey

We are inviting parents of individuals aged 14-40 with the full mutation of fragile X to take part in a new survey. The survey is about what factors may be important to parents when deciding whether to allow their child's electronic health record to be used in a research study. Electronic health records could be an important source of information about fragile X and other health issues. Understanding what is important to parents will allow researchers to give parents the information they need to decide whether to take part in this type of research. The survey also has questions about family characteristics and family experiences with health care.

If you are in our registry and eligible for this survey, we have emailed you a survey code. Please check your email. You will need to enter this code before you start the survey.

Not in our registry but interested in taking this survey? Contact us.
Lost your code or didn't get one? Contact us.

PAST STUDIES

Stress, Coping, and Mindfulness in Mothers of a Child with Fragile X Syndrome

This study included a survey and follow-up phone interviews with some of the survey participants. Mothers of children with fragile X syndrome were asked about their stress and coping strategies as well as their thoughts and opinions about mindfulness, a way to reduce stress.

Sponsor: RTI International

Sensory Experiences Survey (2016)

This survey studied the sensory challenges of people with fragile X syndrome. It also helped us test a new set of survey questions, the Brain-Body Center Sensory Scales (BBCSS).

Sponsor: North Carolina Translational and Clinical Sciences Institute (NC TraCS)

National Fragile X Survey – Phase II (2012)

This project was a follow-up to our first family survey. It addressed many topics, such as family communication and adaptation, female reproductive health and other health issues, autism, behavior and social skills, academic and daily living skills, adult living and employment, and guardianship.

Sponsor: U.S. Centers for Disease Control

Fragile X Caregiver Burden Survey (2011)

In this survey, we talked to caregivers of people with fragile X. We asked them how caregiving affected their health, finances, and daily lives. We also looked at the health characteristics of children and adults with fragile X syndrome. We asked caregivers about the number of visits their child made to specialists and their child's use of medications.

Sponsor: Novartis Pharmaceuticals

National Fragile X Survey – Phase I (2008)

In 2007, we led the first national survey of families touched by fragile X syndrome. Over 1,250 families took part in the study. They answered questions about topics such as family adaptation, conditions related to fragile X syndrome, health experiences, and functional skills. This survey provided new knowledge about fragile X syndrome. It showed that parents are a valuable source of research information.

Sponsor: U.S. Centers for Disease Control