Helping family members at risk for Lynch syndrome get pre-test genetic counseling
Official title: Development and Initial Testing of a Behavioral Intervention to Increase Pre-Test Genetic Counseling Among Families at Risk of Lynch Syndrome
Funded at University of Alabama at Birmingham · NIH-11182738 · Data updated 2026-11-12
A new program to help relatives of people with Lynch syndrome get pre-test genetic counseling so they can learn about their cancer risk and next steps.
Quick facts
| Grant type | NIH-funded research |
|---|---|
| Study type | NIH-funded research |
| Funding institution | University of Alabama at Birmingham NIH-funded |
| Lab location | 1 site (Birmingham, United States) |
| Project start | February 1, 2023 |
| Project end | August 31, 2027 |
| Funding year | 2025 |
| Award (this year) | $180,699 |
| NIH project number | 5R00CA277584-04 |
| Project ID | NIH-11182738 on NIH RePORTER |
Who could benefit from this research
✓Could help
Adults who are blood relatives of someone diagnosed with Lynch syndrome and who have not had prior genetic counseling or a personal history of cancer.
✕Less likely to help
People without a family history of Lynch syndrome, those already diagnosed with LS, or those who have already completed genetic counseling or testing are unlikely to benefit from this program.
What this research studies
First, researchers will talk with relatives who have no personal history of cancer to find out what makes it hard or easy to get pre-test genetic counseling. Next, the team will use those findings and behavior-change theory to design practical supports such as tailored information, outreach, or appointment navigation. Finally, they will do initial testing of the intervention to see if it increases counseling visits and interest in genetic testing among at-risk relatives. The work will include interviews, surveys, and a small pilot rollout led by the University of Alabama at Birmingham.
Why it matters
Potential benefit: If successful, more at-risk relatives may get genetic counseling and testing earlier, enabling earlier screening and prevention that can reduce cancer risk.
How similar studies have gone: Behavioral outreach approaches have improved genetic counseling uptake in some settings, but targeted, theory-based interventions specifically for relatives at risk of Lynch syndrome are largely novel.
Where this research is happening
-
University of Alabama at Birmingham
Birmingham, United States Active
Researchers
- Principal investigator: Yan, Haoyang — University of Alabama at Birmingham
- Study coordinator: Yan, Haoyang
Related research
Other NIH-funded projects on the same topics.
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Immune clues to prevent cancer in Lynch Syndrome
A study exploring how immune signals and shared neoantigens in Lynch Syndrome could help prevent cancer by training the immune system to recognize and fight premalignant lesions.
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Personalized, Noninvasive Surveillance for Lynch Syndrome Colorectal Cancer
This project tests a noninvasive fecal test (FIT) alongside colonoscopy to tailor colorectal cancer surveillance for people with Lynch syndrome.
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Behavioral tool to boost pre-test genetic counseling for Lynch syndrome families
A risk-based program helps families at risk for Lynch syndrome get pre-test counseling more often, so they can learn about genetic testing and cancer prevention.
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Cancer vaccines for Lynch syndrome in a non-human primate model
A researcher is testing a vaccine approach to help prevent Lynch syndrome–related cancers by training the immune system to recognize cancer-causing changes in the colon using a primate model.
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Neoantigen vaccine for Lynch syndrome immune interception
A study to test a vaccine that teaches the immune system to recognize cancer-causing mutations in people with Lynch syndrome.
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Personalized colorectal cancer screening for people with Lynch syndrome
This project aims to find the best colonoscopy schedule for people with Lynch syndrome based on their specific gene.
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.