Low-grade glioma patient registry and engagement hub
Administrative Core
This project builds a secure international registry and online tools to help people with lower-grade (WHO II/III) glioma share their medical records, connect with researchers, and find clinical trials.
Quick facts
| Grant type | NIH-funded research |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Yale University NIH-funded |
| Lab location | 1 site (New Haven, United States) |
| Project ID | NIH-11194269 on NIH RePORTER |
What this research studies
You would be invited to join an international community of people with lower-grade glioma who had tumor surgery at diagnosis and at recurrence. The team will combine hospital-based outreach with web and social-media enrollment to reach about 700 patients. Participants can use secure tools (like a personal health record platform) to share medical records and communicate with researchers, and a trial-matching tool to find relevant studies. Collected clinical data and tumor samples will support genomic analyses of how these tumors evolve over time.
Who could benefit from this research
Good fit: Adults with WHO grade II or III (lower-grade) glioma who had surgical resection at diagnosis and at recurrence and who are willing to share medical records and samples are ideal candidates.
Not a fit: People with other types of brain tumors, those who never had surgery at both timepoints, or those unwilling/unable to share records or samples are unlikely to benefit from joining.
Why it matters
Potential benefit: If successful, this could speed understanding of how low-grade gliomas change and make it easier for patients to access relevant research and trials.
How similar studies have performed: Patient registries and secure data-sharing platforms have helped advance genomic discoveries in other cancers, so this approach has precedent though the specific LGG community focus is relatively specialized.
Where this research is happening
New Haven, United States
- Yale University — New Haven, United States (Active)
Researchers
- Principal investigator: Claus, Elizabeth B. — Yale University
- Study coordinator: Claus, Elizabeth B.
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.