What is this study trying to find out about genetic testing in families with cancer risk?

This study is evaluating new ways to increase engagement with genetics teams and improve genetic testing in families at risk for inherited cancer gene mutations. It compares healthcare providers reaching out directly to relatives against the usual patient-led communication, and also tests a digital portal to help patients and doctors stay updated on uncertain genetic test results. The Memorial Sloan Kettering Cancer Center is leading this research.

Who may be eligible for this cancer genetic counseling clinical trial?

Adults aged 25 years or older who are current patients at Memorial Sloan Kettering Cancer Center with specific cancer-related gene mutations or uncertain genetic test results may be eligible. Participants need to understand English or Spanish well, have an email address, and be willing to use an online patient portal. Please review eligibility criteria for more details.

Is there any cost to participate in this cancer genetic counseling clinical trial?

Study-related care, including the genetic counseling and use of the study portal, is provided at no cost. However, personal travel expenses or other costs may vary and are not guaranteed to be covered. Participants should plan accordingly.

Actively Recruiting

Phase Not Applicable

Age: 25Years +

All Genders

Healthy Volunteers

ID05420064

Digital Technology to Enhance Access to and Effectiveness of Cancer Genetic Counseling Effective Familial OutReach Via Tele-genetics EfFORT Trial Supporting Test Result Interpretation and Variant Education STRIVE Trial

Led by Memorial Sloan Kettering Cancer Center · Updated on 2025-11-12

1000

Participants Needed

Research Sites

26 weeks

Total Duration

AI-Summary

What this Trial Is About

Researchers are evaluating new approaches to cancer genetic counseling to improve patient engagement with genetics teams. This study includes two trials the EfFORT Trial focuses on cascade genetic testing, where healthcare providers reach out directly to family members at risk to recommend testing, comparing it to the usual method where patients inform their relatives. The STRIVE Trial studies an online portal intervention to help patients with uncertain genetic test results and their primary care providers stay updated on new information about those results. The EfFORT Trial compares a control group where patients share a family letter with relatives against an intervention group where providers contact relatives directly, offering telegenetics counseling and at-home saliva testing. The STRIVE Trial compares standard care with a digital portal called MyGene Portal, which offers ongoing access to educational materials, communication tools, medical history updates, notifications about result reclassification, and reminders for follow-up visits. Both trials include standard post-test genetic counseling and follow-up recommendations. Participants will be involved through genetic counseling sessions, use of the online portal, and study surveys. Assessments include measuring how often genetic testing occurs in relatives and participant-perceived quality of care over 12 months. Researchers monitor engagement with the interventions, update family medical histories, and provide support for uncertain genetic results. The study is randomized and open-label, with participants actively involved in education, counseling, and communication activities throughout the study period.

CONDITIONS

Brief Title

An Intervention to Increase Genetic Testing in Families Who May Share a Gene Mutation Related to Cancer Risk and An Intervention to Help Patients and Their Primary Care Providers Stay Up-to-date About Uncertain Genetic Test Results

Who Can Participate

Age: 25Years +

All Genders

Healthy Volunteers

Eligibility Criteria

You may qualify if you...

Current patient at Memorial Sloan Kettering Cancer Center
Received post-test genetic counseling from MSK Clinical Genetics Service within the last 3 months (or within the last year for certain control participants)
25 years of age or older
Understands written and spoken English or Spanish very well
Has at least one at-risk relative who may qualify for the study
First in the family to test positive for certain cancer susceptibility gene mutations or an at-risk relative of such a proband
Biological first-, second-, or third-degree relative of enrolled MSK proband (for at-risk relatives)
Resides within the United States (for at-risk relatives)
Has medical insurance (for at-risk relatives)
Primary care provider resides within the United States (for STRIVE Trial PCP providers)

You will not qualify if you...

Unwilling or unable to provide informed consent
Unwilling or unable to create a MyMSK patient portal account
Does not have an email address
Enrolled in the opposite trial (EfFORT participants cannot be in STRIVE and vice versa)
Has previously undergone genetic testing for the familial pathogenic variant (for at-risk relatives)
Has opted out of study contact (for at-risk relatives)
Contact information not available (for STRIVE Trial primary care providers)

Research Team

Kenneth Offit, MD, MPH

Zsofia Stadler, MD

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