Early Childhood Longitudinal Study of Brain Development

Principal Investigator: Allan Reiss, MD

Co-Investigator: Amy Lightbody, Ph.D.

Study Overview

The Center for Interdisciplinary Brain Sciences Research at Stanford University, directed by Allan Reiss, MD, is carrying out a nationwide study in collaboration with the University of North Carolina at Chapel Hill. This study focuses on families who have a male toddler with either fragile X syndrome, autism, idiopathic developmental delays, or typical development. Children are assessed at 18-48 months of age for Time 1 and again 24 months later at 42-72 months of age for Time 2.  This study is unique in that it examines cognitive and behavioral development as well as brain development in these very young children.

Participation

Each of the participating families visits Stanford (or UNC) in order for the child to complete a cognitive and behavioral evaluation and undergo an MRI of the brain. During the evaluation day, parents and children are assessed using standardized tests that focus on general cognitive functioning, language skills, adaptive behavior, symptoms of autism, and other specific area of functioning. Parents complete a number of questionnaires and interviews that focus on the children's behaviors, developmental histories, school experiences, and therapeutic interventions. Parents also complete questionnaires about themselves and their home environment.

Study Goals

The overall aim of this study is to examine the trajectory of gene, brain and behavior relationships in fragile X syndrome from a developmental perspective, beginning at the earliest ages that it is feasible to undertake such a study.  As fragile X is a disorder with its initial manifestations observed in infancy, knowledge of early variation in brain development is critical to improve our understanding of specific gene-brain-behavior connections in this condition. In addition, the infancy and pre-school period is a time of tremendous growth and development of the brain. By studying the changes in the brain over time in this stage of development, we can examine early signs of aberrant brain development as well as the relationship of these neurodevelopmental changes to measures of cognitive and behavioral functioning. This in turn will lead to targeted interventions specific to fragile X.

Study Update

We have completed our Time 1 data collection and are currently publishing results from this time point.  We are also finishing up our Time 2 visits with the children in the study and plan to begin publishing longitudinal results in the upcoming year.