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: Identifying Translational Sleep Biomarkers in Autism
The Manoach Lab at Massachusetts General Hospital is conducting a research study to explore brain activity during sleep and sensory processing in individuals living with Fragile X syndrome (FXS).
Single-Dose Study for Adult Men with FXS
Cincinnati Children's Hospital Medical Center is looking for males ages 18-40 with FXS to participate in a single-dose clinical trial that is studying a drug called Gaboxadol.
Study: Somatic symptom development in 6-12 year old females with an FMR1 mutation (SoS Study)
Researchers at the New York State Institute for Basic Research are conducting a study to better understand the development of physical (somatic) symptoms in females living with and without an FMR1 gene variation.
Study: Web Intervention for Parents of Youth with Genetic Syndromes (WINGS)
Researchers at the Autism Assessment, Research, Treatment & Services (AARTS) Center at Rush University Medical Center are currently conducting a fully-virtual research study that is testing two telehealth interventions that are designed to help parents of children with genetic syndromes and intellectual disabilities gain strategies to manage challenging behaviors.
Neural Underpinnings of the Relationship Between Cognition and Gait Dysfunction in Fragile X-Associated Tremor/Ataxia Syndrome (FXTAS)
Movement disorders researchers at Rush University Medical Center are conducting a research study to learn about brain activation in people living with FXTAS during tasks like walking and thinking. This study is currently recruiting adults ages 50+ who are living with FXTAS.
Pharmacogenomics and the Fragile X Community: Interest and Prior Understanding
Researchers at the University of Alabama are looking for members of the FX community to take their online survey so they can explore the knowledge & opinions of the FXS community on pharmacogenomic testing.