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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View More Opportunities
The UC Davis MIND Institute is currently recruiting study research participants. 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.
This survey will help support families in the Early Check study in NC whose newborns have been diagnosed with Fragile X and inform the design of an early intervention program for these babies.
RTI Int’l and UNC at Chapel Hill are conducting a research study to learn more about early development of young children with Fragile X in North Carolina, and the experiences of their parents when obtaining the diagnosis and early intervention services.
A survey to measure levels of behavior. When someone with FXS is experiencing anxiety, describe what you see and hear, and how the experience impacts your/their quality of life.