Newswise — LEXINGTON, Ky. (May 13, 2019) – UK HealthCare recently opened the Oncology Research Information Exchange Network’s (ORIEN) Total Cancer Care Protocol to pediatric patients, becoming the first cancer program in the country to do so.

ORIEN is an alliance of 19 major cancer centers that shares information to allow its members to push forward evidence-based cancer care to patients. In 2017, the University of Kentucky Markey Cancer Center joined the network; just a year later, Markey hit a milestone of enrolling more than 1,000 patients, placing it in the top third of the consortium in terms of accrual rate.

ORIEN members follow the Total Cancer Care® Protocol, operated by M2Gen, a for-profit subsidiary of the Moffitt Cancer Center in Tampa, Florida. Total Cancer Care is a unique approach to studying patients throughout their lifetime and provides a standard system for tracking patients’ molecular, clinical and epidemiological data. This gives clinicians and researchers access to a searchable, growing database of medical information from respected peers that can help them match patients to targeted treatments.

Up to 10 percent of all pediatric cancer patients have inherited a genetic mutation that places them at a higher lifetime cancer risk.  Without genetic testing, it’s difficult to know which patients are affected. Because Total Cancer Care follows patients throughout their life, it allows researchers to anticipate trends or changes in the patient’s disease, and to have patients worked up and ready to immediately enroll in appropriate clinical trials as they become available. It will also help predict which patients may need additional cancer screenings that fall outside of standard national recommendations.

“Identifying an inherited cancer syndrome is critical not only for the immediate cancer care of our patients, but also because they should be carefully followed after their cancer treatment ends to monitor and catch any subsequent problems early,” said Dr. John D’Orazio, interim chief of the UK Department of Pediatric Hematology/Oncology. “Their management requires a multidisciplinary and long-term approach, and the opportunities provided by the ORIEN Total Cancer Care study allow us to offer this to our patients.” 

D’Orazio notes that this issue is especially critical to the patients who are treated in UK HealthCare’s Adolescent and Young Adult (AYA) Oncology program, which covers the 15-29 year-old age group.

“There are important genetic implications to these patients, as well as their family members including siblings, parents and their own children,” D’Orazio said.

At UK, pediatric patients may receive treatment through Kentucky Children’s Hospitaland/or the UK Markey Cancer Center. Patients can be eligible for Total Cancer Care from birth onward, if they have been diagnosed with cancer or at risk for cancer, and if they are willing to participate in research and share information.