New York: A smartphone-based app can help improve the accuracy of data in some clinical trials involving individuals with intellectual disability, report researchers.
The most common genetic causes of intellectual disability are Down syndrome and fragile X syndrome.
The goal, said the researchers at University of California-Davis Health in the US, is to track symptoms related to executive function, often associated with attention deficit hyperactivity disorder (ADHD), using the new smartphone app called ‘iBehavior’.
“It’s a really smart use of a ubiquitous technology and it could make a huge difference in the accuracy of measurement in clinical trials,” said David Hessl, a professor in the department of psychiatry and behavioral sciences at UC Davis MIND Institute.
Hessl was awarded a two-year, $431,000 grant from the National Institutes of Health (NIH) for the project.
The study will focus on children and young adults with intellectual disability.
“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.
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.
