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Toolkit aims to break the silence around inherited cancer genes

NCT ID NCT04428736

Knowledge-focused Sponsor: University of Pennsylvania Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing
Running, but no longer taking on new participants.
Completed This study
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

First seen Jun 26, 2026 · Last updated Jun 27, 2026 · Updated 1 time

Summary

This study tested whether a 'Disclosure Toolkit'—including a family letter, a chatbot, and a website—helps people with BRCA1 or BRCA2 mutations share their genetic test results with at-risk relatives. Researchers enrolled 52 participants to see if the toolkit improves communication and encourages relatives to get tested. The goal is to find better ways to spread life-saving genetic information within families.

What this could mean

Our plain-language read of the trial. This is informational only, not medical advice or a prediction.

Active substance
Disclosure Toolkit (family letter, chatbot, website)
What this could lead to
If successful, this toolkit could help more at-risk relatives learn about their genetic risks and get tested, potentially preventing cancer through early detection.
What could go wrong
This is a small, completed study with only 52 participants, so results may not apply to everyone. The toolkit's impact on actual testing rates is uncertain.

This is an AI summary of the original study and may miss details. Read our disclaimer.

Study facts

What this study's own registry entry says, in plain language.

Participants

52 people

The number who actually took part.

Started

Feb 2020

Finished

Dec 2025

Lead sponsor

Other sponsor

The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Who is studied

Participants will be ascertained through the clinical genetics programs at Penn Medicine (Mariann and Robert MacDonald Cancer Risk Evaluation Program, "CREP," the Gastrointestinal Cancer Risk Evaluation Program, "GI CREP," and Penn Telegenetics). Participants will be clinical patients identified to be a carrier of a high risk cancer predisposition gene mutation as determined by the study team. Participants will have been through a formal pre-test genetic counseling consultation and will be approached for study enrollment at time of result disclosure (either telephone or in-person) - also known as the "post-test" visit. Disclosure of genetic test results will be facilitated by a participating genetic counselor.

Ages

18 years and older

Sex

Anyone

Healthy volunteers

Accepted

You do not need to have the condition being studied to take part.

Show the full entry requirements

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

Inclusion Criteria: * 18 years of age and older * Proband must be carrier of a high risk cancer predisposition gene * Relative must be established relative of respective proband participant and deemed "at-risk" for familial gene mutation and eligible genetic testing candidate as per study team determination * Participants must be able to understand and read English * Participants must be able to provide informed verbal or written consent Exclusion Criteria: * \<18 years of age * Individuals who are mutation negative for high risk cancer predisposition genes * Individuals who are carriers of a variant of uncertain significance in any gene * Individuals who test positive for more than 1 high risk cancer predisposition gene * Individuals who cannot speak and read English * Individuals who do not have any at-risk relatives (eligible for familial gene mutation testing) as per study team determination * Major psychiatric illness or cognitive impairment that in the judgement of the study investigators or study staff would preclude study participation * Any patients who are unable to comply with the study procedures as determined by the study investigators or study staff * No available family members for cascade opportunity (adoption, estrangement, etc.)

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Conditions

The condition(s) this trial relates to.

BRCA1-related cancer predisposition BRCA2-related cancer predisposition

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

BRCA1 mutation BRCA2 mutation

Contacts and locations

Locations

  • Abramson Cancer Center

    Philadelphia, Pennsylvania, 19104, United States

More trials for these conditions

Other studies related to the condition(s) this trial covers.