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 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

Research: Did you grow up in Iowa, or know someone who did?

Are you, or someone you know, a carrier of the FMR1 premutation? If so, you may be eligible for our study of language and social characteristics in fragile X syndrome and the FMR1 premutation! Our...

Survey: Parent decision-making to inform Fragile X syndrome clinical drug trials

New survey study to investigate the decision-making process among parents considering enrolling their child with FXS in a clinical drug trial. Fill out a questionnaire which will ask you about factors...

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

AFQ056 for Language Learning in Children with Fragile X Syndrome (NN107) NN107 FX-LEARN is currently looking to enroll children with Fragile X Syndrome (FXS) for a research study conducted by the Netw...
Family running

St. John’s Study: Positive Family Intervention for Families of Children with Fragile X Syndrome: Using Telehealth to Reduce Problem Behavior and Improve Maternal Mental Health

Free Treatment Study! Are you a mother of a child with Fragile X Syndrome? Would you like free parent training? At St. John’s University, we are conducting a research study on the effectiveness of a...
Nick and attendee

MGH/Harvard Study: Assessment of Glutamatergic Neurosystem in Fragile X Syndrome for Targeted Therapy

MGH/Harvard is recruiting adult males with Fragile X Syndrome, 18 years or older, for a neuroimaging study. Participants will be compensated up to $350. The aim of the study is to examine problems ...

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...