Indiana program to help diagnose undiagnosed rare diseases
Indiana Collaborative for Undiagnosed Rare Disease
['FUNDING_U01'] · INDIANA UNIVERSITY INDIANAPOLIS · NIH-11263776
This project helps people in underserved Indiana communities get access to genetic testing and specialty care to find causes of rare, undiagnosed conditions.
Quick facts
| Phase | ['FUNDING_U01'] |
|---|---|
| Study type | Nih_funding |
| Sex | All |
| Sponsor | INDIANA UNIVERSITY INDIANAPOLIS (nih funded) |
| Locations | 1 site (INDIANAPOLIS, UNITED STATES) |
| Trial ID | NIH-11263776 on ClinicalTrials.gov |
What this research studies
The team partners with community health organizations across Indiana to build local capacity for rare disease care and to connect patients to genetic medicine. They will work with about 30 individuals from underserved communities who have unexplained conditions and gather information on the barriers that limit access to specialty care. The project combines community outreach, clinic-based referrals, and use of diagnostic genomic technologies to try to shorten the diagnostic odyssey. Findings will be used to design better pathways so more people can get appropriate testing and follow-up.
Who could benefit from this research
Good fit: Ideal candidates are people living in underserved areas of Indiana who have a rare or undiagnosed condition and have not yet received a clear diagnosis.
Not a fit: People who already have a confirmed diagnosis or who live outside the Indiana service area are unlikely to benefit from this project.
Why it matters
Potential benefit: If successful, this could help people get a diagnosis faster and link them to appropriate care and resources.
How similar studies have performed: Related regional and national programs have helped some patients get diagnoses using genomic testing and coordinated care, but improving access in underserved communities remains an ongoing challenge.
Where this research is happening
INDIANAPOLIS, UNITED STATES
- 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 below.