Creating a new assessment tool for Down Syndrome Regression Disorder
Development and Validation of the Down Syndrome Regression Rating Scales
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 ID | NIH-10932241 on NIH RePORTER |
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.
Who could benefit from this research
Good fit: Ideal candidates for this research are adolescents and young adults with Down syndrome, particularly those experiencing symptoms of regression.
Not a fit: 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.
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 performed: 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
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.