“Social-environmental factors have profound effects on neurodevelopment and behavior. We need to address the child’s social environment if treatments are to be successful.”
– Scott S. Hall, PhD, Stanford University
In 2015, The John Merck Fund awarded a $1 million, four-year grant to Scott Hall, Associate Professor of Psychiatry and Behavioral Sciences at Stanford University School of Medicine, to explore the treatment of disruptive behaviors in Fragile X syndrome. Fragile X syndrome (FXS) is an intellectual disability that affects one in 4,000 males and one in 8,000 females and causes learning difficulties, hyperactivity, social anxiety, hypersensitivity to sensory stimuli, and autism and autism-related behaviors.
Many individuals with FXS, particularly boys, show severe disruptive behaviors, such as self-injury, property destruction, and aggression. These behaviors can be extremely distressing for families and severely impact the child’s quality of life and education. Currently available drug therapies for these behaviors have not been shown to be very effective.
Dr. Hall’s research explores how social-environmental factors play a role in the development and maintenance of these behaviors, and his project evaluates a behavioral, rather than pharmacological, treatment for children with FXS. Following in-home assessments, caregivers receive daily coaching over a twelve-week period via telemedicine, enabling them to implement a standardized treatment protocol to reduce problem behaviors. Each child’s treatment is based on an initial analysis of the function of the child’s disruptive behavior.
Dr. Hall and The John Merck Fund hope that his project will have a positive, near-term impact on children with FXS and their families by informing their treatment decisions and decreasing stress at home and at school. The novel use of telemedicine to deliver interventions for problem behavior in FXS may be especially beneficial, given that many families live hundreds of miles from an FXS clinic and disruptive behaviors can make face-to-face treatment a challenge. Results from this study may also set the stage for future combined pharmacological and behavioral intervention trials, and may be used as evidence in efforts to convince health care companies to cover behavioral treatment.
JMF’s grant to Dr. Hall is part of our Developmental Disabilities Program’s Translational Research Program – supporting research with the potential for near-term positive impact on people with developmental disabilities and their families.
Dr. Hall has a long history of novel research in Fragile X syndrome treatments. He and his research lab – the Translational Applied Behavior Analysis Laboratory – focus on understanding how biological and environmental factors affect the development of behavior disorders in children with FXS and other developmental disabilities. The goal of the lab is to develop syndrome-specific treatments based on the underlying biological and/or environmental factors that cause these behaviors.