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
NFXF Gene Therapy Community Survey
Help the NFXF - share your thoughts on gene therapy.
Study: Mechanisms and biomarkers of disease progression in Fragile X-associated tremor/ataxia syndrome (FXTAS)
The University of Kansas BRAIN Lab is conducting a research study to learn about behavioral and brain differences associated with the Fragile X premutation. Males and females ages 50-80 living with the Fragile X premutation, with or without FXTAS, may be eligible to participate. The study includes remote & in-person visits at the University of Kansas.
Exploring Potential Barriers to the Fragile X Syndrome Cascade Screening Process
Researchers at the University of Memphis and Cincinnati Children's Hospital Medical Center are conducting a research study exploring the relationship between barriers and the FXS screening process among family members.
Grief and Bereavement Experiences of Children with Intellectual Disabilities
Researchers at the University of Maryland are looking to understand how children with Fragile X syndrome (FXS) and other intellectual disabilities grieve the loss of a loved one. If you are the parent or guardian of a child with FXS or another intellectual disability who has experienced the death of someone in their life when they were 5-17 years old, researchers want to talk to you.
Language Learning in Children: Vocabulary Acquisition in a Meaningful Context
The University of Washington's Neurodevelopmental Language and Learning (NeuDLL) Lab is conducting research addressing how children learn words in stories and the skills that support learning. Participation is remote and can be completed from home. Sessions are scheduled at your convenience.
Study: Recording the Experiences of Black and Hispanic Mothers who have Children with Fragile X Syndrome
Are you a Black or Hispanic woman raising a child with Fragile X syndrome? Researchers want to hear about your experiences. The South Carolina Family Experiences Lab is conducting 30-minute interviews to learn about the experiences of Black and Hispanic women raising a child with Fragile X syndrome. About the Study Who can participate? Black and Hispanic women of any age, who have a child with Fragile X syndrome, may [...]