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.

Eligibility

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.

FAQs

Goal: 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 FXS.

For participants: 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.

The UC Davis Health System takes protecting your information and privacy very seriously. Your information will not be released to research coordinators until you have agreed to each request. To learn more about UC Davis Health System’s policies and compliance programs visit: UC Davis Privacy Policy

Full mutation, with or without mosaicism.

Yes:

  • Length of time needed to be stable: Preferably 8 weeks
  • Any exclusionary medications: No

Yes.

*Note that this is an exception to our general guidelines: Please do not post about your experiences on Facebook or other social media outlets. We strongly discourage anyone posting either positive or negative experiences on social media. This will help avoid any type of study bias. 

The UC Davis MIND Institute is a collaborative international research center, committed to the awareness, understanding, prevention and care of neurodevelopmental disabilities.

UC Davis MIND Institute
2825 50th St.
Sacramento, CA 95817

LEARN MORE

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.

Outside Resources:

Learn About Clinical Trials »
From ClinicalTrials.gov, maintained by the National Library of Medicine (NLM) at the National Institutes of Health (NIH).

Need More Information?

Review our clinical trial FAQs & Resources to help you with your decision to participate, or reach out to us to answer any additional questions.

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