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.
About the Study
Who can participate?
You can enroll in the Our Fragile X World registry if you are:
- The parent of a child with Fragile X under 18 years old (premutation or full mutation).
- The parent of an adult male with the full mutation.
- The legal guardian of a child or adult with Fragile X (premutation or full mutation).
- Someone 18 years or older with the full mutation and you are your own legal guardian.
- Someone 18 years or older with the premutation.
What will happen in the study?
To join the Our Fragile X World registry, you will complete an enrollment survey, which takes about 20 minutes. It asks questions about you and your spouse and children (if applicable).
After you have enrolled in the registry by completing the enrollment survey, we may invite you to take part in future studies about Fragile X. You may receive up to two study invitations per year. Most studies are web-based. You can decide whether to take part in each study.
What are the good things that can happen from this research?
There are no personal benefits to you in joining the Our Fragile X World registry, however, future research studies will contribute to our overall understanding of Fragile X and how it affects both children and families.
What are the bad things that can happen from this research?
It is possible that a question on the Our Fragile X World enrollment survey could make you feel uncomfortable but most of the questions in the survey can be skipped.
As with any online survey, there is always a risk that confidentiality may be breached. However, we want to assure you that we make every effort to keep the information you give us secure.
Will you/your child be paid to complete this survey?
There is no payment for joining the Our Fragile X World registry.
Principal Investigator
Melissa Raspa
mraspa@rti.org
(919) 541-8736
Frequently Asked Questions
Our Fragile X World is a research community located at RTI International.
Participants can be in the U.S. or international.
Our Most Recent Opportunities
Study: Memory Game in Children with FXS
A study to learn about memory and memory development in children with Fragile X syndrome.
Focus Group: Parental Satisfaction with Fragile X Resources
A USC master’s program research study to learn about parents’ satisfaction with resources received when child is diagnosed with FXS.
POcKIT Study: At-Home Study for Young Children with FXS
Purdue University is conducting a research study to learn about how genetic, biological, nutritional, and environmental information relates to health and development in Fragile X syndrome.
Study: Adolescents and Adults with IDD Needed for a Spatial Abilities Study
The Spatial Development Lab at Montclair State University is conducting a research study to learn about spatial abilities, such as why we sometimes get lost in the environment. About the Study Who can participate? Individuals with intellectual and/or developmental disabilities, ages 12-25, may be eligible to participate. What will happen in the study? If the individual qualifies and decides to be in this research study, they will complete fun computer and paper games online, for ...
Survey: Medication Trials — What Should We Do Next?
Researchers at The Patrick Wild Centre are asking for your opinion on clinical trials and medications for Fragile X syndrome. Have a say in the future of clinical trials for Fragile X by filling out a 10-minute online survey.
Research Study: Power of the Point — Predictors of Early Language Development in Fragile X Syndrome
The Development in Neurogenetic Disorders Lab at the University of Illinois at Urbana-Champaign is conducting a research study to learn about what skills support early language development.