Collaboration to diagnose and treat undiagnosed rare diseases in Indiana
Official title: Indiana Collaborative for Undiagnosed Rare Disease
Funded at Indiana University Indianapolis · NIH-10980047 · Data updated 2026-11-12
This study is working to help kids under 11 in Indiana who have rare diseases by bringing together experts to make it easier for families to get the right diagnosis and care, especially for those who might not have had access before.
Quick facts
| Grant type | U01 cooperative agreement |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Indiana University Indianapolis NIH-funded |
| Lab location | 1 site (Indianapolis, United States) |
| Project start | August 1, 2024 |
| Project end | July 31, 2028 |
| Funding year | 2024 |
| Award (this year) | $764,549 |
| NIH project number | 1U01NS139219-01 |
| Project ID | NIH-10980047 on NIH RePORTER |
Who could benefit from this research
✓Could help
Ideal candidates for this research are children under 11 years old who are suspected of having undiagnosed rare diseases.
✕Less likely to help
Patients with well-diagnosed conditions or those outside the age range of 0-11 years may not benefit from this research.
What this research studies
This research aims to improve the identification and management of rare diseases in Indiana, particularly for children under 11 years old. It addresses barriers to access and diagnosis by creating a collaborative network of experts in genetics and community health. The project focuses on enhancing diagnostic evaluations and ensuring that underserved populations receive the necessary care. By leveraging local expertise and community participation, the initiative seeks to provide equitable access to genetic services across the state.
Why it matters
Potential benefit: If successful, this research could lead to earlier and more accurate diagnoses for children with rare diseases, improving their health outcomes.
How similar studies have gone: Other collaborative efforts in rare disease diagnostics have shown promise in improving access and outcomes, indicating that this approach could be effective.
Where this research is happening
-
Indiana University Indianapolis
Indianapolis, United States Active
Researchers
- Principal investigator: Ware, Stephanie M — Indiana University Indianapolis
- Study coordinator: Ware, Stephanie M
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.