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.
Frequently Asked Questions
Participants can be in the U.S. or international.
Our Most Recent Opportunities
Individuals with FXS who are 18 years or older and able to talk fluently about own experiences, and their caregivers and providers may be eligible to participate. Eligible providers include teachers, psychologists, social workers, and physicians.
NFXF has partnered with an advisory committee of international fragile X professionals to create an international fragile X premutation research registry. Find out how to participate.
A Mount Sinai Genetic Counseling graduate student is conducting a research study to learn about possible benefits and side effects of CBD supplements when used to treat FXS symptoms. This information will be obtained by using an anonymous online parental and caregiver survey. About the Survey Who can participate? Parents and caregivers caring for somebody with FXS who uses, or has used, CBD supplements may be eligible to participate. The parent or caregiver responding to the survey must be at least 18 years old. The individual with ...
Researchers at Teachers College at Columbia University are conducting a survey to learn about the impact that the COVID-19 pandemic has had on multiple aspects of the lives of people with Fragile X Syndrome. We want to see how the Fragile X community specifically was impacted so that we can have a more focused plan of action for helping these families. The overall goal of this survey is to distribute our findings to medical professionals so that they can see what gaps have been created in their practices from the pandemic.
Participants of this study will explore what information is considered most important to recently diagnosed fragile X premutation carriers. Open to premutation carriers 18 and over who were diagnosed sometime since January 2018.
Kaylynn Shuleski, a master’s in genetic counseling candidate, is conducting a research study to explore the concerns and challenges caregivers may face when planning long-term supports and living arrangements for their adult children with Fragile X syndrome (FXS). This information will be valuable for current and future families when considering long-term supports, as well as for healthcare professionals, counselors, and policy makers. About the Study Who can participate? Parents and caregivers of adults with full mutation ...