Patient engagement program for people with low‑grade glioma
Participant Engagement Unit
This project uses patient input, community partnerships, and online tools to enroll and follow adults with low‑grade glioma in an international registry.
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-11194271 on NIH RePORTER |
What this research studies
You would be invited to join an international registry for low‑grade glioma that was built with patient groups and online tools. The team will work with patients and partners to create clear messages and easy signup steps to enroll 700 adults with recurrent LGG. Participants may be asked to share medical records, complete online questionnaires, and provide blood or saliva and preserved tumor samples. The project will also return overall study findings and some individual genomic results to participants when available.
Who could benefit from this research
Good fit: Adults (21+) with recurrent low‑grade glioma who are willing to share clinical information and provide blood/saliva and/or paraffin‑embedded tumor specimens are ideal candidates.
Not a fit: People without a low‑grade glioma diagnosis, those unwilling to share data or samples, or those seeking immediate treatment changes may not receive direct clinical benefit from participation.
Why it matters
Potential benefit: If successful, this could make it easier for people with low‑grade glioma worldwide to join research, share samples, and receive study findings that may inform future care and trials.
How similar studies have performed: This effort builds on an existing International LGG Registry and on prior online and registry recruitment approaches that have successfully enrolled rare‑disease patients, though applying these methods broadly to LGG remains relatively new.
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.