Studies and Clinical Trials

///Studies and Clinical Trials
Studies and Clinical Trials 2019-01-04T12:01:32+00:00

Research Recruitment for Studies and Clinical Trials

The National Fragile X Foundation is committed to helping advance new and improved treatments and interventions for Fragile X-associated Disorders.

  • If you are a researcher who wishes to learn how the NFXF can assist you with recruitment, please keep reading.
  • If you are a family member and are interested in finding studies and trials you or your loved one can participate in, please use our search tool below.  If you have any questions about a specific study, please use the contact information listed on the clinic’s announcement.

For Clinical Trials

All companies/professionals requesting assistance with Research Recruitment for a clinical trial (medication or therapy), must have their trial reviewed and approved by the NFXF Clinical Trials Committee (CTC). The CTC is a team of Fragile X professionals and NFXF staff who function under confidential agreements. The CTC highly recommends that any company/team developing a trial, request to meet with the CTC early in the development stage of their trial. Email Jayne Dixon Weber for more information. Once the trial has been approved by the CTC, the NFXF will provide the list of Frequently Asked Questions (FAQs) for the company to complete, and will proceed with the website posting.

For Studies/Surveys (non-therapy/medication clinical trials)

All organizations requesting assistance with Research Recruitment for their study or survey must have it reviewed by the NFXF, according to the guidelines set out by the NFXF Scientific & Clinical Advisory Committee. Please email


The NFXF offers a fee-based service for Research Recruitment which can include, but is not limited to: multiple meetings with the CTC, website postings, social media postings, emails, print mailings, webinars, and review of written materials. The NFXF offers a complimentary first meeting with the CTC and listing on the website.


Please email

Studies and Clinical Trials Filter

MRI and PET scan images

Study: Fragile X Syndrome at NIH

This research seeks to understand how protein formation in the brain is affected in fragile X syndrome (FXS). Researchers will measure the rate at which the brain makes proteins (protein synthesi...
senior male headshot

Longitudinal Study of Brain and Cognition in Fragile X Premutation Carriers (TRAX)

Researchers at the UC Davis MIND Institute are examing changes in the brain and cognition associated with aging, in males with the Fragile X premutation compared to those without....

Clinical Trial CONNECT-FX: ZYN002 Gel

This study will evaluate the efficacy and safety of ZYN002, a clear cannabidiol (CBD) gel that can be applied to the skin (called transdermal application) twice a day for the treatment of behavioral s...
Fragile X adult and Tracy Stackhouse

Online Survey: Preferences for the Use of Medical Records in Research

Researchers at Our Fragile X World are inviting young adults with the full mutation of Fragile X between the ages of 18 and 40 to take part in a new survey. The survey asks about what things ma...
Women with Fragile X

Survey: Women with Fragile X Syndrome

Fragile X syndrome is the most common cause of inherited intellectual disability. The clinical variability of this syndrome is wide, particularly in females who initially were thought to be unaffected...

Online Interview Market Research Opportunity

Looking for: Parents/caregivers of children (males and females) with the full mutation of Fragile X syndrome between the ages of 3-17 years old. What you will do: Online interview – requires a c...