Care needs for young people born with variations in sex traits
Official title: Measurement of Care Needs in Youth with VST Congenital Conditions
Funded at Children's Research Institute · NIH-11367884 · Data updated 2026-11-12
This project will create questionnaires to learn what care young people with variations in sex traits need and prefer.
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 | 2025 |
| Award (this year) | $701,320 |
| NIH project number | 5R01HD114134-03 |
| Project ID | NIH-11367884 on NIH RePORTER |
Who could benefit from this research
✓Could help
Ideal participants are young people around ages 12–20 (and possibly young adults) with variations in sex traits who are willing to answer surveys or interviews and share health information.
✕Less likely to help
People without variations in sex traits or those unwilling or unable to complete interviews or surveys are unlikely to receive direct benefit from participation.
What this research studies
If you take part, researchers will work with youth, families, and clinicians to create short questionnaires that capture care preferences, experiences, and needs. You may be asked to do interviews, fill out surveys, or share clinic data and medical history. The team will compare responses from those with and without access to interdisciplinary care and from youth with and without neurodevelopmental disabilities. The goal is a validated, youth-friendly tool to help guide personalized care and better coordinate services.
Why it matters
Potential benefit: If successful, the project could help clinicians understand and respond to young people's care needs, improving shared decision-making and quality of care.
How similar studies have gone: There are currently no validated measures specific to youth with VST, so this work is relatively novel though similar patient-centered measure projects have succeeded in other conditions.
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.