Enhancing Information Management for Young Adults After Genetic Cancer Risk Testing

Trial statusRecruiting
Trial phaseNot applicable
Trial typeInterventional
Biological sexAll
Age18-39
SponsorDana-Farber Cancer Institute

About this trial

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)

Eligibility criteria

This trial accepts healthy volunteers

Qualifiers

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.

Disqualifiers

None

Trial design

Design model

Single group

Treatments tested in this trial

  • Nest Platform

    Behavioral

    Patient- and clinician-facing portal via secure link

Treatment groups

40 Participants
are divided into 2 treatment groups
Group A: Nest Refinement PhaseExperimental treatment 1 intervention
Group B: Nest Pilot PhaseExperimental treatment 1 intervention

Trial outcomes

Primary outcomes

1

Proportion of Participant Utilization (Feasibility)

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

Time frame
2 hours
2

Proportion of Clinician Utilization (Feasibility)

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

Time frame
2 hours
3

Proportion of Clinicians with FIM (Feasibility of Intervention Measure) Score > 4

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

Time frame
At post-visit survey, up to 2 hours
4

Proportion of Participants with AIM (Acceptability of Intervention Measure) Score > 4

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

Time frame
At post-visit survey, up to 30 days

Secondary outcomes

1

Change in knowledge of cancer risk

Change in cancer knowledge will be assessed by participant survey at baseline and post visit.

Time frame
Baseline and post visit up to 2 hours
2

Change in Recommended screening

Change in Recommended screening will be assessed by participant survey at baseline and post visit.

Time frame
Baseline and post visit up to 2 hours

Other outcomes

Sponsors and contacts

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