Caregiver rating scale for regression in Down syndrome
Development and Validation of the Down Syndrome Regression Rating Scales
They are creating a short parent questionnaire to spot and track regression symptoms in teens and young adults with Down syndrome.
Quick facts
| Grant type | R01 grant |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Virginia Commonwealth University NIH-funded |
| Lab location | 1 site (Richmond, United States) |
| Project ID | NIH-11174590 on NIH RePORTER |
What this research studies
Researchers will recruit about 600 adolescents and young adults with Down syndrome, some who have experienced regression and some who have not. They will work with families, clinicians, and experts to develop and refine a parent-report Down Syndrome Regression Rating Scale (DSRRS) using feedback from stakeholders. The team will test the questionnaire alongside clinical evaluations to make sure it reliably identifies regression and tracks change over time. The goal is a low-burden tool families can use by phone or online to help guide care and research.
Who could benefit from this research
Good fit: Adolescents and young adults with Down syndrome (roughly ages 10–30), particularly those whose caregivers have noticed declines in thinking, daily skills, mood, or movement, are the intended participants.
Not a fit: People without Down syndrome, those well outside the adolescent/young-adult age range, or individuals whose symptoms are clearly caused by a known unrelated medical condition are unlikely to benefit.
Why it matters
Potential benefit: A validated, easy-to-use caregiver questionnaire could help families and clinicians recognize regression earlier, monitor recovery, and improve access to appropriate treatment.
How similar studies have performed: This is a relatively new, much-needed approach for Down syndrome regression—small clinical reports exist but there is not yet a widely validated caregiver questionnaire for DSRD.
Where this research is happening
Richmond, United States
- Virginia Commonwealth University — Richmond, United States (Active)
Researchers
- Principal investigator: Brown, Ruth C — Virginia Commonwealth University
- Study coordinator: Brown, Ruth C
About this research
- This is an active NIH-funded research project — typically early-stage science, not a clinical trial accepting patient enrollment.
- Some NIH-funded labs run parallel clinical studies or seek volunteers for related work. To check, contact the principal investigator or institution listed above.
- For full project details, budget, and progress reports, visit the official NIH RePORTER page below.