Helping young people with cancer understand their genetic risks
Official title: The AYA-RISE Intervention: Risk Information and Screening Education for Adolescents and Young Adults with Cancer Predisposition Syndromes
Funded at Dana-Farber Cancer Inst · NIH-9848695 · Data updated 2026-11-12
This study is creating a special program to help teenagers and young adults with hereditary cancer risks learn about their health and make smart choices, while also supporting their families along the way.
Quick facts
| Grant type | U01 cooperative agreement |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Dana-Farber Cancer Inst NIH-funded |
| Lab location | 1 site (Boston, United States) |
| Project start | September 18, 2019 |
| Project end | August 31, 2025 |
| Funding year | 2019 |
| Award (this year) | $3,543,148 |
| NIH project number | 1U01CA243688-01 |
| Project ID | NIH-9848695 on NIH RePORTER |
Who could benefit from this research
✓Could help
Ideal candidates for this research are adolescents and young adults diagnosed with cancer who may have hereditary cancer predisposition syndromes.
✕Less likely to help
Patients who do not have a hereditary cancer predisposition syndrome or who are not diagnosed with cancer may not benefit from this research.
What this research studies
This research focuses on developing a specialized program to help adolescents and young adults (AYAs) with hereditary cancer predisposition syndromes understand their cancer risks and make informed decisions about their health. The program includes genetic counseling tailored to the unique emotional and developmental needs of AYAs, aiming to empower them to take ownership of their health. By providing education and support, the intervention seeks to improve communication about cancer risks and encourage proactive health behaviors. The project will also explore how these interventions can positively impact not just the individuals but their families as well.
Why it matters
Potential benefit: If successful, this research could significantly enhance the ability of young cancer patients to understand their genetic risks and make informed health decisions.
How similar studies have gone: Previous research has shown that tailored genetic counseling can improve understanding and decision-making in cancer risk, suggesting that this approach may be effective.
Where this research is happening
-
Dana-Farber Cancer Inst
Boston, United States Active
Researchers
- Principal investigator: Mack, Jennifer W — Dana-Farber Cancer Inst
- Study coordinator: Mack, Jennifer W
Related research
Other NIH-funded projects on the same topics.
-
Core administrative hub for a multifaceted cancer center program
A large, international cancer research program at Dana-Farber aims to advance a curative strategy for multiple myeloma by coordinating translational research, clinical trials, and data analysis.
-
Automated, interactive lab tool to define radiation targets in cancer care
Aims to make it easier and safer to outline the area to treat in radiation therapy for cancers by using smart software and a patient-friendly interface.
-
Cancer Atlas Network data hub to share big cancer data
A national project helps researchers store, harmonize, and share large cancer data collections so doctors and scientists can learn from many patients.
-
Bridge-building cancer research partnership for education, outreach, and science
A joint effort between UMass Boston and Harvard Cancer Consortium to accelerate cancer research and education by connecting lower-resourced institutions with a leading cancer center.
-
NexTGen: Next-Generation T cell therapy for childhood cancers
A charity-friendly overview: researchers at Dana-Farber are developing advanced engineered T-cell therapies to treat pediatric solid cancers like brain tumors and sarcomas.
-
Integrative study of multiple myeloma genetics and disease biology
A team at Dana-Farber and partners is pursuing a long-term project to understand the genetic and molecular drivers of multiple myeloma and how treatments interact with disease biology.
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.