Research Archives

Clinical Trial in Adults with Fragile X

Fragile X Alliance Inc. and the Murdoch Childrens Research Institute are participating in a clinical trial testing a new treatment for Fragile X syndrome. The treatment is a capsule and the medication is taken twice daily for 12 weeks.

To be eligible to participate in the trial, patients must fit the following criteria:

• Be aged 18-45 in otherwise good general health. If female, you must be willing to use contraception for the duration of the study.
• Have a previous diagnosis of Fragile X based on genetic testing (full mutation)
• Have a caregiver who spends on average at least 6 hours a day with the study participant and is willing to supervise treatment, attend all study visits and assist with study assessments.
• Have a documented mild to moderate intellectual disability (IQ score less than 70)

The study lasts for a total of 20 weeks and includes a 3-week screening period, 4 weeks’ run-in, 12 weeks’ treatment and one week follow up.

Download these details

If you would like more details on the trial, please contact the Fragile X Alliance Inc. on 03 9528 1910.

The Kid’s Focus Project:

A study about academic lives in relation to anxiety and attention in young girls with Fragile X syndrome.

The project, conducted by Monash University Centre for Developmental Psychiatry &
Psychology, will involve:

• Parents completing questionnaires
• The girls using fun computerized game-like tasks
• The girls being interviewed by researchers to define their profiles.
• A year later the profiles will be reexamined to understand how they develop.

The collective findings will be shared with families and schools

For more information please read the Project Pamphlet.

Ocular Study

A pilot study which will examine eye control in relation to FXTAS. Participants will be maternal grandfathers of people with fragile X syndrome. The study will be conducted by the Ocular Motor Research Laboratory, Dept of Neurology, Royal Melbourne Hospital.

The research project is aiming to investigate eye movements and their control by higher functions of the brain, in order to provide insights into the generation of the cognitive and movement disorders associated with abnormalities of the FMR1 gene.

For more information please read the Project Abstract

FXS Testing Project

We are offering FXS testing by cheek swab or blood test to women at different centres in Perth and Melbourne, both before and during early pregnancy, in order to ascertain attitudes to testing and inform best practice. The project is running over three years from 2010 to 2012.

The study, which has received part funding from the prestigious National Health and Medical Research Council (NHMRC), is being run in conjunction with Murdoch Childrens Research Institute and Melbourne University.