Researchers are testing the effectiveness of Metformin to help improve daily living for individuals with Fragile X syndrome.
The trial further assesses Metformin’s safety, as well as the benefits of the drug, which has been shown to improve the symptoms and difficulties individuals with FXS experience, including: delayed language/cognition, excessive eating, obesity, hypogonadism, and delayed puberty.
Who can participate?
Individuals aged 6–25 who have been diagnosed with FXS (and who fit the inclusion/exclusion criteria).
What will happen in the study?
Commit to a four-month study which includes three clinic visits, and five phone calls while taking Metformin orally. Complete various tasks, questionnaires, and examinations by a physician/research team, as well as have blood drawn, as well as urine and stool samples taken.
Will you/your child be paid to complete this survey?
Travel expenses will be reimbursed.
Study doctors and locations
Please fill out the form below to send your contact information to the study coordinators.
Dr. Francois Bolduc, Principal Investigator
University of Alberta/Stollery Children’s Hospital
Edmonton, Alberta, Canada
Dr. Sébastien Jacquemont, Principal Investigator
CHU Ste. Justine
Montreal, Quebec, Canada
Study Coordinators: Maryse Thibeault or Sophie Morin
Our Most Recent Opportunities
NFXF has partnered with an advisory committee of international fragile X professionals to create an international fragile X premutation research registry. Find out how to participate.
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 ...
Researchers at Teachers College at Columbia University are conducting a survey to learn about the impact that the COVID-19 pandemic has had on multiple aspects of the lives of people with Fragile X Syndrome. We want to see how the Fragile X community specifically was impacted so that we can have a more focused plan of action for helping these families. The overall goal of this survey is to distribute our findings to medical professionals so that they can see what gaps have been created in their practices from the pandemic.
Participants of this study will explore what information is considered most important to recently diagnosed fragile X premutation carriers. Open to premutation carriers 18 and over who were diagnosed sometime since January 2018.
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 ...
Males between the ages of 18 and 30 years with a diagnosis of Fragile X syndrome (full mutation) may be eligible to participate.