Closing the gaps in prevention and surveillance for hereditary cancer
Enhancing Information Management for Young Adults After Genetic Cancer Risk Testing
NA · Nest Genomics · NCT06654466
This project will test whether the Nest software helps adults aged 18–49 with inherited cancer risk follow recommended screening and care.
Quick facts
| Phase | NA |
|---|---|
| Study type | Interventional |
| Enrollment | 100 (estimated) |
| Ages | 18 Years to 49 Years |
| Sex | All |
| Sponsor | Nest Genomics (industry) |
| Locations | 1 site (Boston, Massachusetts) |
| Trial ID | NCT06654466 on ClinicalTrials.gov |
What this trial studies
Nest is an EMR-integrated software platform that stores structured genetic results, generates guideline-based personalized care plans, and gives patients a mobile-friendly way to view and share results. In Phase 1 the team will pilot the platform for feasibility and acceptability, and in Phase 2 they will compare outcomes for Nest users versus non-users. Enrolled adults with pathogenic or likely pathogenic variants will complete a post-visit survey, use the Nest navigator if randomized to the intervention arm, and follow clinician-recommended screening and follow-up while researchers measure knowledge, distress, sharing of results, and adherence to care plans. The study is conducted at Dana-Farber Cancer Institute and includes implementation outcomes to support broader dissemination.
Who should consider this trial
Good fit: Ideal participants are English-speaking adults ages 18–49 with a pathogenic or likely pathogenic variant that raises cancer risk, who are not receiving active cancer therapy and who receive care at Dana-Farber Cancer Institute.
Not a fit: Patients without a pathogenic variant, those younger than 18 or older than 49, non-English speakers, people not treated at Dana-Farber, or those undergoing active cancer therapy are unlikely to benefit from this study.
Why it matters
Potential benefit: If successful, Nest could increase adherence to guideline-based screening, improve patient understanding of genetic risk, and make it easier to share results with relatives and other clinicians.
How similar studies have performed: Other digital decision-support and patient-facing tools have shown modest improvements in guideline adherence, but fully EMR-integrated platforms like Nest are relatively new and less extensively tested.
Eligibility criteria
Show full inclusion / exclusion criteria
Inclusion Criteria: * Ages 18-49 years, inclusive * previous cancer genetic testing with a finding of a pathogenic or likely pathogenic variant resulting in an increased risk of cancer warranting clinical management. * English-speaking and -reading * Receiving care at Dana Farber Cancer Institute * Not in active cancer therapy at the time of approach Exclusion Criteria: * Age \<18 or \>49 years * Has not had genetic testing for hereditary cancer syndromes or has been tested but no pathogenic or likely pathogenic variant was identified. * Non-English speaking and reading * Not receiving care at Dana Farber Cancer Institute * Active cancer with therapy in progress
Where this trial is running
Boston, Massachusetts
- Dana Farber Cancer Institute — Boston, Massachusetts, United States (RECRUITING)
Study contacts
- Principal investigator: Huma Q Rana, MD — Dana-Farber Cancer Institute
- Study coordinator: Jennifer W Mack, MD
- Email: Jennifer_Mack@dfci.harvard.edu
- Phone: (617) 632-6622
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.
Conditions: Hereditary Cancer Syndromes, Clinical Decision Support, Cancer Surveillance, Cancer Prevention, Guideline Adherence, Adolescent and Young Adult Cancer