An electronic platform to help young adults manage genetic cancer risk information

Enhancing Information Management for Young Adults After Genetic Cancer Risk Testing

This study is testing a new online tool to help young adults who have had cancer genetic testing better understand and manage their genetic risk information.

Quick facts

• Phase: Not applicable
• Study type: Interventional
• Enrollment: 40 (estimated)
• Ages: 18 Years to 39 Years
• Sex: All
• Sponsor: Dana-Farber Cancer Institute (Academic / other)
• Locations: 1 site (Boston, Massachusetts)
• Trial ID: NCT05759143 on ClinicalTrials.gov

What this trial studies

This research aims to develop the Nest electronic platform for young adults aged 18-39 who have undergone cancer genetic testing. The platform will provide continuous access to updated information regarding pathogenic variants and variants of uncertain significance (VUS). Participants will provide feedback on the portal's content and processes, which will guide its refinement. The study includes a baseline survey, usage of the portal after orientation, a follow-up survey, and a 30-minute interview, with a total participation time of up to 2 hours. Approximately 40 individuals will be involved in this pilot phase to assess feasibility and acceptability.

Who should consider this trial

Good fit: Ideal candidates are young adults aged 18-39 who have previously undergone cancer genetic testing and received results indicating a pathogenic variant or VUS.

Not a fit: Patients currently undergoing active cancer therapy may not benefit from this study.

Why it matters

Potential benefit: If successful, this platform could significantly enhance the understanding and management of genetic test results for young adults at risk of cancer.

How similar studies have performed: While the approach of using an electronic platform for genetic information management is innovative, similar studies have shown promise in enhancing patient understanding and engagement.

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.

Where this trial is running

Boston, Massachusetts

• Dana Farber Cancer Institute — Boston, Massachusetts, United States (Recruiting)

Study contacts

• Principal investigator: Jennifer Mack, MD — Dana-Farber Cancer Institute
• Study coordinator: Jennifer Mack, MD

Conditions Genetic Predisposition to Disease; Genetic Predisposition; Genetic Testing; Cancer Risk Syndromes; VUS; Variant of Uncertain Significance; Pathogenic Variant