At a Glance
- Study Type: Study
- Condition: Fragile X Syndrome
- Age: 3–7 (parents 18+)
- Sex: Male
- Participant: Child with FXS + fathers and biological mothers
- Location: Home
- Travel Considerations: No travel required
- Sponsor: UC Davis MIND Institute
UC Davis MIND Institute now recruiting research study participants
The UC Davis MIND Institute is currently recruiting research participants for their Family Relationships and Parenting of Children with FXS study. The study’s goal is to better understand the ways in which characteristics of mothers and fathers and relationships within the family influence the language learning environment of young boys with Fragile X syndrome.
Boys with Fragile X syndrome between the ages of 3 and 7 years old and their fathers and biological mothers.
- Boys with Fragile X syndrome: Ages 3 yrs./0 mos. to 7 yrs./11 mos.
- Biological parents: Ages 18+
What to Expect
Families will participate in this study from their homes via distance video teleconferencing sessions and online surveys. Mothers and fathers will be asked to complete a combination of questionnaires and interviews; and will each engage in play-based interactions with their child.
- Sessions: 5 sessions over the course of approximately 2 weeks
- Session Length: Will vary between approximately 30 minutes to 2 hours
Upon completion of the study, each family will be offered a one-on-one session with the speech-language pathologist leading the study to discuss evidence-based parent strategies for engaging in interactions with the child that will foster communication development.
A Mom Shares Her and Her Son’s Experience Participating in a Fragile X Clinical Trial »
Diane and her son Joshua volunteered for a clinical trial a little over a year ago. In this heartwarming video, his mom shares how their family made the decision to participate, and what the experience has been like so far.
Dr. Elizabeth Berry-Kravis on the Challenges Inherent in a Clinical Trial »
We asked NFXF scientific advisor, doctor, and clinical researcher Dr. Elizabeth Berry-Kravis to comment on the challenges inherent in a clinical trial.
Clinical Trials From Start to Finish (Webinar) »
Sharyn Lincoln and Katherine Pawlowski of Boston Children’s Hospital speaks with us about how clinical research trials work, what it takes to participate, and what happens after the study.
Learn About Clinical Trials »
From ClinicalTrials.gov, maintained by the National Library of Medicine (NLM) at the National Institutes of Health (NIH).
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Our Most Recent Opportunities
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 »
Males between the ages of 18 and 30 years with a diagnosis of Fragile X syndrome (full mutation) may be eligible to participate.
The Research in Neurodevelopmental Disabilities Lab at the Waisman Center at the University of Wisconsin-Madison is looking for parents of male or female children 6 to 17 years old with Fragile X syndrome for an online survey.