"The majority of clinical trials focused on people with intellectual disability have relied on parent or caregiver questionnaires, much like traditional paper and pencil rating scales," said Hessl. That means families have to remember over a fairly long period of time -- sometimes weeks -- what their child's behaviour was like. "The app uses what we call an ecological momentary assessment, where a parent or teacher observes the child or young adult and provides ratings of behaviour much closer to the time the behaviour occurred," Hessl added. Families will be trained in how to use the app and what behaviour to look for.

The app will send a text when it's time for them to start observing their child or young adult, they'll observe for two hours, then they'll get another text that it's time to record what they observed. They'll record information about aggression and irritability, hyperactivity and impulsivity, attention problems, anxiety-related behaviour and avoidance and more, likely daily. Classroom teachers may also be asked to take part.

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There is currently no treatment for fragile X syndrome; there are only treatments for symptoms. The researchers are hopeful that this app will improve the assessment of a child's behaviour before, during and after treatment as well improve the assessment of potential targeted treatments.

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