Better patient engagement and clearer genomic results for rare cancers
Engagement Optimization Unit
This project tries different ways to help adults with rare cancers join genomic research and receive their genetic findings clearly and supportively.
Quick facts
| Grant type | NIH-funded research |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Washington University NIH-funded |
| Lab location | 1 site (Saint Louis, United States) |
| Project ID | NIH-11191585 on NIH RePORTER |
What this research studies
From a patient's perspective, the project refines how people are recruited, consented, followed, and told about genomic testing results for cancers that need more study. It focuses on three cancer types—cholangiocarcinoma, multiple myeloma, and early-onset colorectal cancer—and gives special attention to low-resourced and rural communities. The team will run ongoing evaluations and a randomized trial of different return-of-results approaches and use embedded ethics input to address concerns as they arise. Findings and best practices will be integrated with the center's engagement and genome characterization teams to improve the whole genomic research experience.
Who could benefit from this research
Good fit: Adults (21+) diagnosed with cholangiocarcinoma, multiple myeloma, or early-onset colorectal cancer, especially those from low-resourced or rural communities, are the intended participants.
Not a fit: People without these cancer types, children under 21, or anyone not enrolled in the genomic sequencing program are unlikely to see direct benefits from this project.
Why it matters
Potential benefit: If successful, patients could have easier enrollment, clearer explanations of genetic results, and more supportive follow-up after genomic testing.
How similar studies have performed: Some prior engagement programs and return-of-results efforts have improved communication, but randomized trials focused on rare cancers and underserved groups are relatively new.
Where this research is happening
Saint Louis, United States
- Washington University — Saint Louis, United States (Active)
Researchers
- Principal investigator: Drake, Bettina F. — Washington University
- Study coordinator: Drake, Bettina F.
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.