A network to diagnose rare diseases in patients who have not found answers.
Official title: Pacific Northwest Undiagnosed Disease Network Clinical Site
Funded at University of Washington · NIH-10976984 · Data updated 2026-11-12
This study is here to help people with rare diseases who have struggled to get a diagnosis by bringing together a team of experts to find answers and improve how we identify these conditions.
Quick facts
| Grant type | U01 cooperative agreement |
|---|---|
| Study type | NIH-funded research |
| Funding institution | University of Washington NIH-funded |
| Lab location | 1 site (Seattle, United States) |
| Project start | September 15, 2023 |
| Project end | July 31, 2028 |
| Funding year | 2024 |
| Award (this year) | $703,807 |
| NIH project number | 2U01NS134355-06 |
| Project ID | NIH-10976984 on NIH RePORTER |
Who could benefit from this research
✓Could help
Ideal candidates for this research are individuals of all ages who have experienced prolonged diagnostic challenges without a conclusive diagnosis.
✕Less likely to help
Patients with well-defined and diagnosed conditions may not receive any benefit from this research.
What this research studies
This research aims to provide diagnoses for patients suffering from rare diseases who have faced long and unsuccessful diagnostic journeys. The Pacific Northwest Undiagnosed Disease Network (UDN) utilizes a collaborative approach involving a diverse team of experts in genetics, immunology, and various medical specialties to evaluate both adult and pediatric patients. By leveraging advanced genomic technologies and regional medical resources, the UDN seeks to identify novel disorders and improve diagnostic methods for undiagnosed patients. This initiative not only aims to provide answers to patients but also contributes to scientific discovery in the field of rare diseases.
Why it matters
Potential benefit: If successful, this research could lead to accurate diagnoses for patients with rare diseases, improving their treatment options and quality of life.
How similar studies have gone: Previous initiatives within the Undiagnosed Disease Network have shown success in diagnosing rare diseases and advancing understanding in this area.
Where this research is happening
-
University of Washington
Seattle, United States Active
Researchers
- Principal investigator: Jarvik, Gail Pairitz — University of Washington
- Study coordinator: Jarvik, Gail Pairitz
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.