Terry Fox Research Institute and cross-Canada partners give $16.4 million boost to young people fighting hard-to-treat cancers

Eighty per cent of children diagnosed with cancer will survive but outcomes are grim for the 20 per cent whose cancers have spread, returned or are resistant to treatment. These outcomes haven’t changed for the past nearly 40 years since Terry Fox embarked on his Marathon of Hope across Canada. Terry Fox PROFYLE, a new initiative announced by the Terry Fox Research Institute (TFRI) at The Hospital for Sick Children (SickKids) today, is aiming to give the 20 per cent of children and young adults with hard-to-treat cancers another chance to beat their disease.

Precision Oncology For Young peopLE, or PROFYLE, unites research and funding partners from all over Canada to molecularly profile the tumours of patients under 29 who are out of conventional treatment options, no matter where they live within the country. If Terry Fox had been diagnosed with cancer today, he would have qualified for PROFYLE when his osteosarcoma tumour returned and spread to his lungs. With a $5 million investment from TFRI, this unique partnership has raised $16.4 million to date.

This project is invaluable to patients like Marlow Ploughman, 8, who was diagnosed with rhabdomyosarcoma (a type of soft-tissue cancer that can be found in muscles) when she was just two and a half years old. After her cancer relapsed for the fourth time, doctors told Marlow’s parents there were no more conventional treatments left to try. That’s when the family learned about Terry Fox PROFYLE.

“[Terry Fox PROFYLE] is extremely important, because with children like Marlow we have very few options except the one conventional protocol that we’re given,” said Marlow’s mom, Tanya Boehm. “PROFYLE provides a key to unlock the door to perhaps more options – or at least provides us more time to wait for some more options to come.”

In its pilot stage, PROFYLE enrolled 40 patients from all 10 provinces and plans to enrol at least 450 patients Canada-wide in its first four years. Once a child is enrolled in the study, his or her tumour sample will be sent to one of three profiling sites in Canada. The results are then discussed by a national tumour board and the patient may be enrolled in a clinical trial if they meet a trial’s criteria.

By profiling these tumours from across Canada, researchers will be able to accumulate more data, leading to a better picture of what the data means for current and future patients. This is particularly important for paediatric patients as the cancers of children and young adults are different from the cancers of older adults.

“Regardless of where a child or young person may live…the creation of PROFYLE will ensure equal access for any patient with hard-to-treat cancer to DNA sequencing of their tumour, definition of its molecular signature, and enrolment on new drug trials designed to specifically target their disease,” says Dr. David Malkin, Marlow’s oncologist and Senior Scientist at SickKids, and Director of Terry Fox PROFYLE. “I would like to believe that PROFYLE will transform Terry’s Marathon to a strong sprint to the finish.”