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.
Preferences for the Use of Medical Records in Research Survey
We conducted two surveys, one with parents of individuals with fragile X syndrome and another with young adults with fragile X syndrome, to explore what factors are important to when deciding whether to allow researchers to access their (or their child’s) electronic health record.
Sponsor: Eunice Kennedy Shriver National Institute of Child Health and Human Development
Publications: Findings from this study have not yet been published.
Stress, Coping, and Mindfulness in Mothers of a Child with Fragile X Syndrome (2017)
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.
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)
Publications: View list
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.
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.
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.