Digital tools to expand access to cancer genetic counseling and reach at-risk relatives
Digital Technology to Enhance Access to and Effectiveness of Cancer Genetic Counseling
This project uses digital tools plus provider outreach to help people with hereditary cancer risks and their relatives get counseling and genetic testing.
Quick facts
| Grant type | R01 grant |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Sloan-Kettering Inst Can Research NIH-funded |
| Lab location | 1 site (New York, United States) |
| Project ID | NIH-11093917 on NIH RePORTER |
What this research studies
If you or a family member carry a genetic change that raises cancer risk, this project tests a new genetic counseling approach that combines provider-led outreach with digital tools for education and communication. You may be asked to share results with relatives or allow providers to contact them directly to encourage "cascade" testing, and the team will track who completes testing. The project also focuses on people who have variants of uncertain significance (VUS) to reduce confusion and improve how updates are shared with your local primary care doctor. Researchers will use rigorous experimental methods to compare this new model to usual care and measure uptake, understanding, and continuity of care.
Who could benefit from this research
Good fit: Ideal participants include people who carry pathogenic or likely pathogenic cancer gene variants (probands) and their adult relatives at increased genetic risk, and patients with variants of uncertain significance.
Not a fit: Patients without a family history of hereditary cancer, those not carrying relevant genetic variants, or people without reliable access to digital communication may not gain direct benefit.
Why it matters
Potential benefit: If successful, this could lead to more relatives completing predictive testing, clearer information about uncertain results, and better follow-up with your primary care provider.
How similar studies have performed: Previous studies show provider-facilitated outreach can improve cascade testing, but digital-enhanced models have not yet been proven in rigorous randomized studies.
Where this research is happening
New York, United States
- Sloan-Kettering Inst Can Research — New York, United States (Active)
Researchers
- Principal investigator: Offit, Kenneth — Sloan-Kettering Inst Can Research
- Study coordinator: Offit, Kenneth
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.