Enhancing Information Management for Young Adults After Genetic Cancer Risk Testing

Summary

This research is being done to develop the electronic platform Nest for young adults (ages 18-39) who have had prior cancer genetic testing. The platform will give patients and their clinicians access to continuously updated information about both pathogenic variants and variants of uncertain significance (VUS). The name of the intervention used in this research study is: Nest portal (electronic platform for patients and clinicians)

Detailed description

The goal of the electronic platform Nest is to help patients understand and manage genetic test results and recommended care and to help clinicians with access to results and recommendations, facilitating orders, and documentation. The portal has two parts, one for participants and one for clinicians. For the first phase of the study, participants will give their feedback on the Nest portal's content and processes that will guide refinement of the portal. The Pilot phase will test the feasibility and acceptability of the intervention. The research study procedures include a baseline survey, using the portal after receiving a brief orientation from the study team, a follow-up survey, and then a 30-minute interview. Participants will be in this research study for up to 2 hours. It is expected that about 40 people will take part in this research study. The electronic platform is being developed by Nest Genomics.

Arms & interventions

• BehavioralNest Platform

  Patient- and clinician-facing portal via secure link

Outcome measures

Eligibility criteria