Trial aims to improve family communication about inherited colorectal cancer risk

In time for Colorectal Cancer Awareness Month in March, the Alliance for Clinical Trials in Oncology has launched a new clinical study aimed at helping improve how patients with colorectal cancer share information about the genetic risks to their family members. Supported by grants from the National Cancer Institute, the trial, "Family Communications After Genetic Testing," seeks to enroll about 4,000 colorectal cancer patients and their at-risk relatives across the United States.

Many people don't realize that colorectal cancer can run in families. In fact, about 30% of colorectal cancer cases are linked to genetics, and around 15% of newly diagnosed patients have a gene change (called a pathogenic germline variant) that increases cancer risk. Our study aims to improve communication between patients and families about the genetic risks of cancer in the hopes of catching or preventing colorectal cancers early when they are most easily treated."

Heather Hampel, M.S., CGC, study co-chair and genetic researche, City of Hope cancer center in Duarte, Calif.

When it comes to colorectal cancer, when one person in a family is found to have an inherited gene change, close relatives, including parents, children and siblings, may also carry the same gene. Knowing this can help families get earlier screening, take preventive steps, and catch cancer sooner when it's easier to treat. Unfortunately, many relatives never receive this important information.

This trial will compare two ways of sharing genetic test results with a patient's close relatives:

• Option 1: The patient shares the information personally with relatives (called proband-mediated communication).
• Option 2: A healthcare provider reaches out directly to family members to explain the genetic findings and recommend testing (called provider-mediated communication).

The goal is to learn which method helps more family members get the genetic testing they may need.

Through the study, researchers hope to learn:

• How many first-degree relatives (such as parents, children and siblings) complete genetic testing using each approach.
• Whether relatives who learn they also carry a gene change take steps to protect their health (such as increased screening, like colonoscopies or at-home testing kits) within 12 months.
• How communication approaches work for different groups of people, such as different ages, ethnicities, or whether they live in rural or urban areas.

The trial will be available to people diagnosed with colorectal cancer, stage I to IV, within the previous three months.

"Sharing genetic information can be stressful and confusing, especially right after a cancer diagnosis," said Frank Sinicrope, MD, study co-chair and a gastroenterologist at the Mayo Clinic in Rochester, Minn. "Some patients aren't sure how to explain test results, while others worry about upsetting loved ones. This study hopes to identify a clear, helpful approach that makes it easier for families to understand their risks and take preventive action."