Summary
Assent is required for most children and adults with intellectual disabilities, including individuals with Down syndrome, to participate in clinical trials. However, the capacity (ability to understand information and make an appropriate choice) to assent in people with Down syndrome is unknown; given that Down syndrome is associated with cognitive impairment, it is likely that many individuals with Down syndrome do not have capacity to provide assent. This project will determine the capacity of individuals with Down syndrome to provide assent as well as determine the assent-related preferences of parents/legally authorized representatives of children and adults with Down syndrome.