Creating a new assessment tool for Down Syndrome Regression Disorder
Official title: Development and Validation of the Down Syndrome Regression Rating Scales
Funded at Virginia Commonwealth University · NIH-10932241 · Data updated 2026-11-12
This study is looking for parents of teens and young adults with Down syndrome to help create a new tool that will make it easier to spot and track changes in their loved ones' abilities, so we can better understand and support those experiencing Down Syndrome Regression Disorder.
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 start | September 20, 2023 |
| Project end | August 31, 2028 |
| Funding year | 2024 |
| Award (this year) | $781,668 |
| NIH project number | 5R01HD113711-02 |
| Project ID | NIH-10932241 on NIH RePORTER |
Who could benefit from this research
✓Could help
Ideal candidates for this research are adolescents and young adults with Down syndrome, particularly those experiencing symptoms of regression.
✕Less likely to help
Patients who do not have Down syndrome or those who are outside the age range of 10 to 30 years may not benefit from this research.
What this research studies
This research focuses on Down Syndrome Regression Disorder (DSRD), a condition that causes a decline in cognitive and adaptive functioning in adolescents and young adults with Down syndrome. The project aims to develop the Down Syndrome Regression Rating Scale (DSRRS), a parent-report tool that will help identify patients with DSRD and monitor their treatment responses. By assembling a cohort of 600 participants, the research will gather valuable data to improve understanding and treatment of this condition. The study emphasizes a stakeholder-informed approach to ensure the assessments are relevant and effective.
Why it matters
Potential benefit: If successful, this research could lead to better identification and treatment options for individuals with Down Syndrome Regression Disorder.
How similar studies have gone: While research on Down syndrome is ongoing, the specific approach of developing a standardized assessment tool for DSRD is relatively novel and has not been extensively tested.
Where this research is happening
-
Virginia Commonwealth University
Richmond, United States Active
Researchers
- Principal investigator: Brown, Ruth C — Virginia Commonwealth University
- Study coordinator: Brown, Ruth C
Related research
Other NIH-funded projects on the same topics.
-
Exploring how Down syndrome affects optic nerve health in kids
A study using a mouse model to understand why optic nerve problems are common in children with Down syndrome and how to prevent them.
-
Executive Function Enhancement for Young Children with Down Syndrome
A caregiver-guided program for kids with Down syndrome aged up to 11 to strengthen their thinking skills during early childhood.
-
Silencing an Extra Chromosome to Help Down Syndrome and Related Conditions
A patient-friendly plan to use a gene-based approach to quiet an extra chromosome in cells and a mouse model to reduce disease-related effects in Down syndrome and other chromosomal imbalance disorders.
-
Infant Down Syndrome Brain and Behavior Study
A study of infants with Down syndrome to collect brain imaging and developmental data, creating a large, shared resource to understand how autism and other factors relate to development.
-
DS-ARC: Smartphone-based cognitive check for people with Down syndrome at risk for Alzheimer’s
A smartphone-based cognitive test is being developed and tested for people with Down syndrome who may develop Alzheimer’s disease, to track changes quietly in daily life.
-
Immune and NGF factors in Alzheimer’s for adults with Down syndrome
This grant studies why people with Down syndrome develop Alzheimer’s disease by looking at immune signals and nerve growth factor problems.
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.