Worldwide Werner syndrome registry
International Registry for Werner Syndrome
This project collects health information and biological samples from people with Werner syndrome and related early-aging conditions to find genetic causes and help develop possible treatments.
Quick facts
| Grant type | R01 grant |
|---|---|
| Study type | NIH-funded research |
| Funding institution | University of Washington NIH-funded |
| Lab location | 1 site (Seattle, United States) |
| Project ID | NIH-11285428 on NIH RePORTER |
What this research studies
If you join, the team would record your medical history, treatments, and symptoms and ask for genetic tests and blood or tissue samples. They use modern genome sequencing, chromosome microarrays, and confirmatory lab tests to look for disease-causing genetic changes. Your data and samples would be shared with approved researchers worldwide to speed up discovery and possible drug development. Being in the registry could also make you eligible to hear about future clinical trials or new treatment opportunities.
Who could benefit from this research
Good fit: Adults diagnosed with Werner syndrome or other segmental progeroid (early-aging) syndromes, or people with unexplained early-onset aging signs, are the primary candidates for participation.
Not a fit: People without Werner syndrome or related progeroid features, or those seeking immediate therapeutic benefit rather than research contribution, are unlikely to gain direct clinical benefit from enrollment.
Why it matters
Potential benefit: If successful, this work could improve genetic diagnosis and guide development of targeted therapies for Werner syndrome and similar progeroid conditions.
How similar studies have performed: Previous registry and genetic sequencing efforts by this group have already identified several disease-causing genes in progeroid syndromes, though some cases still lack a known genetic cause.
Where this research is happening
Seattle, United States
- University of Washington — Seattle, United States (Active)
Researchers
- Principal investigator: Oshima, Junko — University of Washington
- Study coordinator: Oshima, Junko
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.