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Enhancing Information Management for Young Adults After Genetic Cancer Risk Testing

This study is developing and testing an electronic platform called Nest for young adults (ages 18-39) who have had genetic testing for cancer risk. The Nest platform aims to help you and your doctors access up-to-date information about your genetic test results, including pathogenic variants (gene changes known to increase cancer risk) and variants of uncertain significance (VUS, gene changes whose impact on cancer risk isn't yet clear). The study will first gather your feedback on the platform's content and design. The goal is to see how easy and helpful the Nest platform is for both patients and clinicians. About 40 people are expected to participate.

Study design
This is an interventional study with a planned enrollment of 40 participants. It is testing a behavioral intervention called the Nest Platform.
What's involved
You would complete a baseline survey, receive a brief orientation to the Nest portal, use the portal, complete a follow-up survey, and then have a 30-minute interview. Your participation in the study will last up to 2 hours.
Compensation
Not stated in the trial record.
Follow-up
The primary endpoints are measured at 2 hours and at a post-visit survey, up to 2 hours.

AI-generated from the public study record. Only the study team can confirm whether you're eligible — confirm details with them before making decisions.

NCT05759143

Enhancing Information Management for Young Adults After Genetic Cancer Risk Testing

Active, Not Recruiting
NAAges 18–39InterventionalHealth services
Dana-Farber Cancer Institute
~40 participants
Updated 2026-08-26 on ClinicalTrials.gov
What's tested:Nest Platform

At a glance

Recruiting sites
0 of 1 listed site is recruiting right now
RecruitingSuspended, closed, or not yet open
What they're measuring
Proportion of Participant Utilization (Feasibility)
Measured over 2 hours
+4 more outcomes measured

Conditions

Genetic Predisposition to Disease
Genetic Predisposition

Explore related trials

Cancer Risk SyndromesGene Variant

Where it's being run

1 sites across 1 states
Massachusetts1

Study leadership

  • Jennifer Mack, MD · PRINCIPAL_INVESTIGATOR · Dana-Farber Cancer Institute

Who to contact

This trial hasn't published a contact. View it on ClinicalTrials.gov

Do you actually qualify for this trial?

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Eligibility criteria

Inclusion

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.
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.

What this trial measures

  • Proportion of Participant Utilization (Feasibility)2 hours

    Defined as \> 70% of consenting participants who use the intervention.

  • Proportion of Clinician Utilization (Feasibility)2 hours

    Defined as \> 70% of consenting clinicians who use the intervention.

  • Proportion of Clinicians with FIM (Feasibility of Intervention Measure) Score > 4At post-visit survey, up to 2 hours

    Defined as \>70% of clinicians consider the intervention feasible as assessed by the post-visit survey.

  • Proportion of Participants with AIM (Acceptability of Intervention Measure) Score > 4At post-visit survey, up to 30 days

    Defined as \> 70% of young adult participants consider the intervention successful as measured by a post-visit AIM score \>4

  • Proportion of Clinicians with AIM Score > 4at post-visit survey, up to 2 hours

    Defined as \> 70% of clinicians consider the intervention successful as measured by a post-visit AIM score \>4