Are you interested in participating in a research project? If so, we'd love to hear from you!



We have been supporting Dr Nermin Khalil in recruiting for her study, “Cognitive Emotional Dysregulation of FMR1 Premutation Carrier Mothers of Children with Fragile X Syndrome”. Thank you to all those who have participated so far. Nermin is continuing to recruit to her study until the end of February 2020. You are eligible to participate if you are a premutation carrier mother of a child with fragile X syndrome.


The Stay Calm Project – a study from the Kate Woodcock Research Group, led by Justin Chung under the supervision of Dr Kate Woodcock. Justin is developing a questionnaire that will help to assess the characteristics of emotional outbursts. Justin would love to hear from you if you have a child between the ages of 6-25 who has an emotional outburst at least once a month.


A request from the United States. Dr Elizabeth Berry-Kravis at Rush University is the overall Principal Investigator leading a trial of the drug AFQ056. The main aim of the study, “Effects of AFQ056 on Language Learning in Young Children with Fragile X Syndrome (FXS) (NN107)”, is to test the safety of the drug in children with fragile X syndrome aged between 3-6 years old. It also seeks to see if the drug has any beneficial effects on learning and involves a structured language intervention. Participating in the study would involve 12 trips to the United States in a 10 month period.


To find out more about these and other studies currently recruiting, please click here.


26 November 2019




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