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
An Alliant International University clinical psychology doctoral candidate is conducting a research study to learn about the cognitive profile of children with a full mutation of Fragile X. Males and transgender females between the age of 8 and 12 may be eligible to participate.
The MIND Group at the University of Minnesota is conducting a survey for parents of children with Fragile X syndrome to learn about how genetic and neurodevelopmental differences impact behavioral strengths and challenges. Parents of 3–17 year old children living with Fragile X are eligible to participate.
Purdue University is conducting a research study to learn about language and social communication development in Fragile X syndrome. Children ages 3–4 years (36–60 months) with the full mutation may be eligible to participate.
The University of Kansas Medical Center is conducting a survey to learn about the medical and mental health care needs of individuals and families affected by Fragile X syndrome, premutation carriers, and undiagnosed family members. Persons 18 years and over may be eligible.
The University of Kansas BRAIN Lab is conducting a research study to learn about behavioral and brain differences associated with premutations of the Fragile X gene, FMR1. Individuals ages 50–80 with the FMR1 gene premutation with or without FXTAS may be eligible to participate.