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.


The information you provide will contribute to our understanding of the needs and experiences of families with young children with Fragile X. More specifically, it will help us support families in the Early Check study in North Carolina whose newborns have been diagnosed with Fragile X and inform the design of an early intervention program for these babies.

With any online survey, there is a slight risk of loss of confidentiality. However, the research team will make every effort to keep your information private. Your identifiable information will not be shared with anyone outside the research team. There may be other risks that we do not know about yet.

No. Please note that this survey may ask for names and ages, however we (NFXF) will not have access to that data.

The first twenty participants who complete the survey and request a gift card will receive a $50 gift card!


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, 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.

Our Most Recent Opportunities
If you arrived on this page through a MyFXResearch Portal search, you can close this window and return to your filtered results. Or start a new search here.

Survey: Cannabidiol (CBD) Use with Fragile X Syndrome

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 ...

Parents and Caregivers of Adults with Fragile X Syndrome Needed for a Survey

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 ...