Enhancing Information Management for Young Adults After Genetic Cancer Risk Testing

Launched by DANA-FARBER CANCER INSTITUTE · Mar 6, 2023

Keywords

ClinConnect Summary

This clinical trial is exploring a new electronic platform called Nest, designed to help young adults aged 18 to 39 who have undergone genetic testing for cancer risk. The Nest platform will provide both patients and their healthcare providers with easy access to updated information about genetic findings, including specific harmful changes (pathogenic variants) and those that are unclear (variants of uncertain significance). The goal is to improve communication and support for young adults who may be at risk for cancer due to their genetic test results.

To participate in this study, individuals must be between 18 and 39 years old, have had prior cancer genetic testing with a relevant result, and be receiving care at the Dana-Farber Cancer Institute. They should also be English-speaking and not currently undergoing active cancer treatment. Healthcare professionals involved in the study include oncologists and genetic counselors who work with these young adults. Participants can expect to engage with the Nest platform, which aims to enhance their understanding and management of their genetic information.

Gender

ALL

Eligibility criteria

• Inclusion Criteria AIM 1:
• * YA Patients:
• • Ages 18-39 years, inclusive.
• • Has had previous cancer genetic testing, with a finding of a pathogenic variant or VUS; patient has previously received results from the clinical team.
• • English-speaking and -reading.
• • Receiving care at DFCI.
• • Not undergoing active cancer therapy at the time of approach.
• * Clinicians:
• • Cancer risk physicians (oncologists, gastroenterologists, geneticists), oncologists, nurse practitioners, physician assistants, or genetic counselors.
• • English-speaking and -reading.
• • Cares for YAs aged 18-39 with cancer risk syndromes.
• Inclusion Criteria AIM 2:
• * YA Patients:
• • Ages 18-39 years, inclusive.
• • Has had previous cancer genetic testing, with a finding of a pathogenic variant or VUS; patient has previously received results from the clinical team.
• • English-speaking and -reading.
• • Receiving care at Dana-Farber Cancer Institute.
• • Did not participate in a stakeholder interview (Aim 1).
• • Not undergoing active cancer therapy at the time of approach.
• * Clinicians:
• • Oncologists, nurse practitioners, cancer risk physicians, or genetic counselors.
• • English-speaking and -reading.
• • Caring for a participating YA.