Have you or your child participated in Fragile X research? You can help!
The Brain and Biomarker Lab at the University of Oklahoma is conducting a survey to learn about experiences with research, particularly biomedical* research, in families with Fragile X syndrome (FXS).
*Biomedical could mean anything related to clinical trials, or studies where some kind of physical data was recorded like EEG, blood draws, eye movements, or neuroimaging data for example. However even if you haven’t participated in this type of study before we still want to hear from you!
About the Study
Who can participate?
Caregivers/family members for individuals with FXS and individuals with full mutation FXS may be eligible to participate.
This survey is primarily for caregivers or family members of individuals with FXS, with optional questions for self-advocates with FXS as young at four years old. The caregiver/family member completing the majority of the survey must be 18+ years old.
What will happen in the study?
If the individual qualifies and decides to be in this research study, they will complete a survey online. The survey should take about 10-15 minutes for the caregiver to answer questions about themselves and 1 family member with FXS.
If you choose to answer questions about additional family members with FXS, please allow about 10 minutes per additional family member.
Additionally, individuals with FXS can opt to answer survey questions about their own experiences with research if they would like to participate. FXS self-advocate participation is not required. Surveys for individuals with FXS should take about 10 minutes and may be taken by the individual themselves or questions may be read to the individual by a caregiver. The FXS survey portion may be completed at a separate time from the caregiver survey portion.
What are the good things that can happen from this research?
There are no direct benefits to participating in this survey, however we hope that your answers will help us improve accessibility of biomedical research to FXS families.
What are the bad things that can happen from this research?
The only risk associated with the study is accidental release of data. We store your data in secure databases to reduce this risk.
There may be other risks that we do not know about yet.
Will I or my child be paid to complete this study?
Participants may be compensated for participating.
Interested in Participating?
Our Most Recent Opportunities
Study: Language Study for Children and Adolescents with Fragile X syndrome
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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.