This application is in response to FOA PAR-11-045, Outcome Measures for Use in Treatment trials for Individuals with Intellectual and Developmental Disabilities. We propose to further develop and validate an endpoint measure of communication for use in clinical trials research. We created a scale that reflects the developmental hierarchy of early communication, referred to as the Communication Complexity Scale (CCS). The CCS can be used with children and adults with severe disabilities including individuals with autism, Rhett syndrome, Fragile X syndrome (FXS), and Angelman syndrome. The focus is on developmentally early communication, beginning with alertness to changes in the environment and progressing through beginning word use. The CCS fills a significant gap in available measures that provide a reliable index of early communication development. The CCS has been used successfully in our research projects with over 100 individuals.
In Aim 1 we will evaluate the psychometric properties of the CCS with 300 new participants across ages and types of disabilities. We will measure inter-rater and test/retest reliability of the scale, conten validity, concurrent validity, and discriminant validity.
In Aim 2, we will provide evidence about the sensitivity of the CCS to measure change in clinical trials for behavioral interventions of varying lengths, with both preschool and early elementary-aged children.
Aim 2 will be accomplished in collaboration with researchers at UCLA.
In Aim 3 we will investigate the utility of the CCS as an outcome measure. Following the development of an administration and scoring manual in both English and Spanish, usability testing of the scale and training materials will be completed. Through this research, we will be addressing a critical need identified by NIH to develop and validate outcome measures for use in clinical trials by individuals with ID.

Public Health Relevance

The Communication Complexity Scale (CCS) will be investigated as an outcome measure for use in clinical trial research. We will measure the reliability and validity of the assessment and determine if it measures changes in children with autism who are receiving a behavioral intervention.

Agency
National Institute of Health (NIH)
Institute
Eunice Kennedy Shriver National Institute of Child Health & Human Development (NICHD)
Type
Research Project (R01)
Project #
5R01HD076903-02
Application #
8695425
Study Section
Special Emphasis Panel (ZRG1-BBBP-L (56))
Program Officer
Urv, Tiina K
Project Start
2013-07-05
Project End
2018-04-30
Budget Start
2014-05-01
Budget End
2015-04-30
Support Year
2
Fiscal Year
2014
Total Cost
$351,525
Indirect Cost
$82,883
Name
University of Kansas Lawrence
Department
None
Type
Organized Research Units
DUNS #
076248616
City
Lawrence
State
KS
Country
United States
Zip Code
66045