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: Language Study for Children and Adolescents with Fragile X syndrome
Researchers at the University of Wisconsin-Madison and the University of Massachusetts-Amherst are conducting a study to learn about links between learning and language in Fragile X syndrome.
Survey: Fragile X Nutrition Survey
The University of Wisconsin-Madison is conducting a survey to learn about associations between infant feeding and neurodevelopment in children with Fragile X syndrome.
Clinical Trial: Phase 2B/3 Studies of BPN14770 in Fragile X syndrome
Tetra Therapeutics is conducting a two randomized, placebo-controlled studies of BPN14770/zatolmilast to learn about the experimental drug’s safety and efficacy for males ages 12-45.
IMPACT-FXS: Investigating Multiple Pathways And Combined Treatments for FXS
Healx is conducting a Phase 2, placebo-controlled study in adolescent and adult males with fragile X syndrome (FXS). The purpose of this study is to confirm whether Healx's drug candidates are safe and work as intended to reduce symptoms of FXS.
Survey: Developing a Gold Standard for Tracking Adult Functional Outcomes in Developmental Disabilities (AFS Study)
University of Pittsburgh is conducting this research to develop the Adult Functioning Scale (AFS), a new survey being designed to capture outcomes in the areas of social functioning, employment, independence, and satisfaction for individuals with various developmental disorders.
Study: Aging in Toolbox
Researchers around the country are conducting a study to better understand cognitive profiles in adults with intellectual disability. This study is an extension of the ongoing Toolbox Study, which is aimed to optimize cognitive assessment tools for children and young adults with intellectual disabilities.