Web-Based Family Outreach Program for Cancer Prevention in High-Risk Families

The Patient-Driven Self-Navigated Web-Based Family Outreach Program for Cancer Prevention in High-Risk Families

This trial develops a patient-driven self-navigated web-based family outreach program for cancer prevention in high-risk families. Creating the family outreach program may help to improve the way in which genetic test results are communicated within families and increase the number of at-risk relatives who become aware of their risks.

PRIMARY OBJECTIVES:

I. To develop a secure, web-based program for family outreach in Clinical Cancer Genetics (CCG).

II. The long-term goals of this program are expected to include, but are not limited to the following:

IIa. To enable families with inherited cancer susceptibility and/or at increased familial risk of cancer to provide personal and family history of neoplasia through a convenient and self-directed program.

IIb. To enable communication of possible inherited cancer susceptibility with and among family members through the web-based portal.

IIc. To facilitate genetic testing, screening and prevention strategies in those at risk.

IId. Establish high-risk cohort for optional participation in research and clinical trials.

OUTLINE:

Patients communicate with at-risk family members to share genetic test results and other relevant information, as well as to learn more about their disease via family outreach program website. At risk family members are then contacted by a study coordinator or genetic counselor for further follow-up. At-risk relatives receive resources to facilitate understanding of their at-risk status and to facilitate predictive testing.

Inclusion Criteria:

• Individuals who have been diagnosed with a hereditary cancer-causing mutation. Individuals may be identified through clinical testing as patients at MD Anderson or patients whose mutation was identified at an outside institution who contact the registry
• Individuals that have clinical suspicion for syndromic cancer susceptibility, but in whom mutational testing has been nondiagnostic (depending on condition in question, nondiagnostic testing may be as little as 10%, as in familial adenomatous polyposis [FAP], or as high as 70% in suspected hereditary diffuse gastric cancer or HDGC)
• At-risk family members of individuals with a cancer causing mutation or of individuals with nondiagnostic testing notwithstanding presence of likely syndromic cancer. Such patients will in most cases not be MD Anderson patients. Note: The enrollment, consenting, and evaluation process anticipates and addresses this.

Exclusion Criteria:

• Index patients who test negative for a cancer causing mutation, except for those agreeing to provide family history (FH) that is informative for at-risk individuals when no other source of such information is available
• Patients who are unwilling or are unable to provide informed consent