Measuring What Youth with Variations in Sex Traits Need for Care
Official title: Measurement of Care Needs in Youth with VST Congenital Conditions
Funded at Children's Research Institute · NIH-11401171 · Data updated 2026-11-12
A patient-friendly look at a project to understand and improve how care is planned for young people with VST by listening to their needs and preferences.
Quick facts
| Grant type | R01 grant |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Children's Research Institute NIH-funded |
| Lab location | 1 site (Washington, United States) |
| Project start | September 25, 2023 |
| Project end | June 30, 2028 |
| Funding year | 2026 |
| Award (this year) | $704,252 |
| NIH project number | 5R01HD114134-04 |
| Project ID | NIH-11401171 on NIH RePORTER |
Who could benefit from this research
✓Could help
Youth with Variations in Sex Traits (VST), ages roughly from early adolescence through adulthood, who are receiving or will receive multidisciplinary care.
✕Less likely to help
Patients outside the VST community or those not engaged with multidisciplinary care teams may not directly benefit.
What this research studies
This project aims to gather and use information from youth with VST to guide personalized care across medical, mental health, and developmental services. It focuses on creating youth-attuned ways to capture care preferences and experiences, so clinicians can better coordinate treatment. The work will involve coordinating with interdisciplinary care teams and collecting data that reflect real-life needs of 11- to 21+ year-olds as they navigate adolescence and adulthood. By centering youth voices, the project aims to reduce trauma from care experiences and support better long-term outcomes.
Why it matters
Potential benefit: If successful, care for youths with VST could become more personalized, compassionate, and coordinated, improving quality of life and mental well-being.
How similar studies have gone: There is a need for validated measures of VST care needs and experiences; this project builds on gaps and could pioneer standardized youth-centered tools.
Where this research is happening
-
Children's Research Institute
Washington, United States Active
Researchers
- Principal investigator: Strang, John — Children's Research Institute
- Study coordinator: Strang, John
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.