First of Its Kind Statewide Registry Targets Lynch Syndrome
by Jeannette Moninger
This year, approximately 140,000 Americans will receive a diagnosis of colorectal (colon and rectal) cancer, according to the National Institutes for Health. Up to 5 percent of these cases are the result of an inherited condition known as Lynch syndrome. People with Lynch syndrome, also known as hereditary nonpolyposis colorectal cancer, or HPNCC, are more likely to develop colorectal cancer at an early age. It also increases a
woman’s risk of uterine and ovarian cancer.
“We know of five Lynch syndrome genetic mutations that, if inherited, increase a person’s chances of having cancer,” says Dr. Ken Blake, a colorectal surgeon at Sky Ridge Medical Center. “Genetic testing can identify these gene changes.”
In fact, identifying people with these genetic markers is key to early cancer screenings, detection and life-saving treatment. To help ensure that people with Lynch syndrome receive the education and screenings they need in a timely fashion, Sky Ridge is now home to the western region’s only Lynch syndrome registry.
Earlier this year, Sky Ridge began using a proprietary software program called Cologene developed by the Cleveland Clinic. The registry allows people with Lynch syndrome from across Colorado and neighboring states to submit their genetic test results and family health history (known as a pedigree). Once entered into the system, participants receive screening reminders and educational information
to help lower cancer risk as much as possible.
“Screening guidelines are constantly being reviewed and updated. With the registry, we can notify people immediately about any changes so they can meet with their genetic counselor to discuss the information and get timely screenings when it’s most beneficial,” says Christina Mullen, director of the oncology service line at Sky Ridge.
With a participant’s permission, Sky Ridge can use the registry to share important health information with the participant’s doctors, such
as the primary care physician and gynecologist. Information also can be sent to family members to ensure they get the recommended checkups. The first phase of the registry is currently underway and focuses on capturing information from people whose genetic test results
indicate that they carry the Lynch syndrome gene. In the future, Sky Ridge will also collect information from people who may or may not
carry the gene, but who have a family history of Lynch syndrome or colorectal cancer.