Award
NIH Reporter #5R01HD113711-04
Development and Validation of the Down Syndrome Regression Rating Scales
Recipient
Virginia Commonwealth University
Award Amount
$763,151.00
Ceiling
$763,151.00
Awarded
August 17, 2026
Identifier
5R01HD113711-04
Award for developing and validating a rating scale to assess Down Syndrome Regression Disorder in adolescents and young adults, aiming to improve diagnosis and intervention strategies.
Description
This project aims to develop and validate the Down Syndrome Regression Rating Scale (DSRRS), a parent-report assessment tool designed to aid in the screening, monitoring, and research of Down Syndrome Regression Disorder (DSRD). The study will recruit a cohort of 600 adolescents and young adults with Down syndrome, with and without DSRD, using stakeholder-informed methods. The scale will be developed through focus groups, pre-testing, and item reduction, then validated against existing assessments of DSRD symptoms, with tests for reliability, sensitivity, and specificity.