Actively Recruiting
Enhancing Information Management for Young Adults After Genetic Cancer Risk Testing
Led by Dana-Farber Cancer Institute · Updated on 2026-04-24
40
Participants Needed
1
Research Sites
4 weeks
Total Duration
On this page
Sponsors
D
Dana-Farber Cancer Institute
Lead Sponsor
N
Nest Genomics
Collaborating Sponsor
AI-Summary
What this Trial Is About
Researchers are developing the Nest electronic platform to support young adults aged 18 to 39 who have previously undergone cancer genetic testing. This platform aims to provide patients and their clinicians with continuously updated information on pathogenic variants and variants of uncertain significance (VUS) to help manage genetic test results and recommended care. The study is led by Dana-Farber Cancer Institute and focuses on enhancing information sharing for genetic cancer risk management. The Nest platform includes separate parts for patients and clinicians. The study has two phases: a refinement phase where participants and clinicians provide feedback through interviews to improve the platform, and a pilot phase testing its feasibility and acceptability. Participants receive an orientation and access to the Nest portal and complete surveys and interviews as part of the study procedures. Participants will engage in baseline and follow-up surveys, use the portal after orientation, and participate in a 30-minute interview. Researchers will evaluate how much participants and clinicians use the platform and measure their acceptance and feasibility scores. The study collects data on changes in knowledge about cancer risk and recommended screening. Total participation time is about two hours.
CONDITIONS
Brief Title
Enhancing Information Management for Young Adults After Genetic Cancer Risk Testing
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Ages 18 to 39 years, inclusive
- Had previous cancer genetic testing showing a pathogenic variant or variant of uncertain significance (VUS)
- Previously received genetic test results from clinical team
- English-speaking and reading ability
- Receiving care at Dana-Farber Cancer Institute
- Not undergoing active cancer therapy at time of approach
- Clinicians caring for young adults aged 18-39 with cancer risk syndromes (oncologists, geneticists, nurse practitioners, physician assistants, genetic counselors) who are English-speaking
You will not qualify if you...
- Undergoing active cancer therapy at the time of approach
- Participation in prior stakeholder interview for Aim 1 (for Aim 2 participants)
- Non-English speaking or reading
- Not receiving care at Dana-Farber Cancer Institute (for patients)
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Your Study Journey
Duration - 2 to 4 weeks
Participants are screened for eligibility to participate in the trial.
1 screening and enrollment visit (in-person or virtual)
Duration - Up to 2 hours
Participants receive an orientation to the Nest portal and use the electronic platform to manage genetic test results and recommended care.
1 baseline survey and orientation visit, 1 follow-up survey visit, and 1 interview visit
Trial Site Locations
Total: 1 location
1
Dana Farber Cancer Institute
Boston, Massachusetts, United States, 02115
Actively Recruiting
Research Team
J
Jennifer Mack, MD
How is the study designed?
Study Type
INTERVENTIONAL
Masking
NONE
Allocation
NON_RANDOMIZED
Model
SINGLE_GROUP
Primary Purpose
HEALTH_SERVICES_RESEARCH
Number of Arms
2
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