A Cognitive Test Battery for Individuals with Intellectual Disabilities (IRBnet ID 698133-6)

PURPOSE OF STUDY

The purpose of this study is to validate the NIH-Toolbox Cognition Battery (NIH-TCB) for individuals with intellectual disabilities. Individuals with Fragile X Syndrome and other intellectual disabilities are often asked to participate in cognitive assessments for individualized program planning or to identify changes in cognition due to medications. Many of the current cognitive assessments do not take into account the small changes that may occur over the course of time. We are testing the NIH-TCB to see if it is sensitive to these small changes and to evaluate if this is a useful tool for individuals with Fragile X Syndrome and other diagnoses associated with intellectual disabilities. The institutions participating in this study include the University of Denver, University of California-Davis, Rush University, and Northwestern University. The projected end date for this study is 2025.

PROJECT AIMS

• To validate the NIH-TCB, including measures of executive function, episodic memory, working memory, processing speed, attention, and language, for individuals with ID, and modify it where necessary to meet the needs of this population.
• To examine the sensitivity of the NIH-TCB to detect clinically meaningful differences in persons with ID, including detection of expected syndrome-specific cognitive phenotypes.
• To examine the validity of the NIH-TCB composite scores in ID groups compared with the established composites in general population controls, and to compare their psychometric properties to analogous gold standard measures of general intelligence.
• To examine the sensitivity of the NIH-TCB to detect changes in cognition across a two-year period of development.

The Expressed Emotion of Parents of Children with Intellectual Disabilities (IRBnet 794895-1)

PURPOSE OF STUDY

The purpose of this study is to further explore the expressed emotion of parents of children with Fragile X Syndrome, Down syndrome, and other intellectual disabilities. It is important to explore the expressed emotion of parents of children with additional intellectual disabilities to Fragile X Syndrome to understand the differences so that intervention strategies can be developed specific to families’ needs. Expressed Emotion (EE) is a concept related to the family emotional climate in which a parent (or close relative) talks about their relationship with their child. The primary way of measuring EE is with The Five Minute Speech Sample (FMSS) (Magana-Amato, 2015) which is analyzed through an open-ended monologue by one of the parents.

RESEARCH QUESTIONS

• What is the Expressed Emotion (EE) of parents of children with different intellectual disabilities, including Fragile X Syndrome, Down syndrome and any other identified and/or unidentified intellectual disabilities?
  • EE will be measured by the Five Minute Speech Sample (FMSS).
• Are there significant differences in the Expressed Emotion of parents of children with different intellectual disabilities?