At a Glance
- Study Type: Survey
- Condition: Premutation or full mutation Fragile X
- Age: 0–13
- Sex: All
- Participant: Parent
- Location: Home
- Travel Considerations: No travel required
- Sponsor: The John Merck Fund
Parents of children ages 0-13 with full or premutation Fragile X needed for a survey
RTI International is conducting a survey to learn about the early needs and experiences of families with children, aged 13 or younger, who have been diagnosed with either the full or the premutation of Fragile X.
The online survey should take about 20–90 minutes to complete, depending on the number of eligible children (see more below). The survey may be completed in more than one sitting.
Parents of children with premutation or full mutation Fragile X that meet one of these age requirements may be eligible to participate:
- Age 0–7 (under 8)
- Age 0–13 (under 14) and is the first child diagnosed in family
What to Expect
The survey is online and parents will answer a set of questions for each child:
- First child diagnosed (age 0–13) — approx. 10 min.
- Children (age 0–7) — approx. 45 min. each
The survey can be completed all at the same time, or divided into more than one sitting.
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).
Need More Information?
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.