Studies and Clinical Trials

///Studies and Clinical Trials
Studies and Clinical Trials 2019-02-08T10:55:18+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 jayne@fragilex.org 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 research@fragilex.org

Services

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.

Questions?

Please email research@fragilex.org

Studies and Clinical Trials Filter

Group at sunset

Study on Language Development in Young Adults with Fragile X Syndrome

If you have a son or daughter with fragile X syndrome in or entering the last year of high school, you and your child are invited to participate in a research study being conducted by Dr. Leonard Abbe...
Girl reading a book

Canada: Metformin Clinical Trial

We are attempting to further assess Metformin’s safety, as well as the benefits of the drug, which has been shown to improve the symptoms and difficulties which individuals with FXS experience, incl...
Patient for an EEG

Adults with FXS Needed for AZD7325 Trial

We are asking you and other people with FXS to be in this research, because AZD7325 may be helpful for treatment of FXS, but it needs to be tested to be sure. We hope to learn more about the medicineâ...
FX LEARN

Study: FX-LEARN – Language Learning in Children with FXS

Dr. Elizabeth Berry-Kravis at Rush University is the Protocol Principal Investigator and is leading a national study, NN107 FX-LEARN. There are two purposes to the study. First, to find out if the dr...
brain drawing with a light bulb

Why Do Some People Have Seizures and Others Do Not?

The Modifiers of Fragile X-Associated Disorders (FX-MOD) study is trying to answer the question of why some people with Fragile X syndrome have seizures and others do not, and you can help!...

Boston Children’s Hospital Study: Neural Markers in Fragile X Syndrome

The purpose of this study is to improve our understanding of how differences in brain activity affect learning, language, and behavior in children with Fragile X Syndrome (FXS). Currently, there is no...