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TFRI News | October 02, 2019

Terry Fox PROFYLE research shows profiling cancer tumours in real time is giving hope to children and young adults previously out of treatment options

For release 11 am EST, Oct. 2, 2019

Watch Terry Fox PROFYLE update video

VANCOUVER, BC – Early results show that an innovative research program honouring Terry Fox’s legacy is providing treatment opportunities to children and young adults with cancer who had previously been out of options.

To date, some 320 children are enrolled in Terry Fox PROFYLE, a unique pan-Canadian research study that is focused on molecularly profiling the tumours of these children in real time, with the goal of finding new treatments that are more effective and have fewer side effects.

“We’re extremely pleased with what we have been able to accomplish at this stage. We have both extended lives and improved the quality of life for many of the children enrolled in the program by profiling their tumour(s) and enabling them to access new treatments,” says Dr. David Malkin, a pediatric oncologist at The Hospital for Sick Children (SickKids) in Toronto and director of Terry Fox PROFYLE. “Significantly, seven out of ten children and young adults whose tumours were sequenced had findings that resulted in a management recommendation being presented to their oncologist. We are changing the course of childhood cancer therapy with this new approach.”

Diagnosed with neuroblastoma when she was five, Kathryn Stewart, now 16, has been through several treatments over 11 years, including multiple rounds of chemotherapy, radiation, immunotherapies and surgeries. She has relapsed seven times.

“I’ve been through so many rounds of different kinds of therapies and multiple relapses that when doctors took a biopsy of a tumour on my leg, I asked to get it sequenced. I wanted to find out what treatments could work for me as an individual,” says the Grade 11 student from Georgetown, Ontario.  Enrolled in Terry Fox PROFYLE while receiving treatment at SickKids, doctors found her cancer had a high number of genetic mutations, leading to a new treatment course. Kathryn started this treatment recently and her latest scans show her cancer has not progressed. “Now, we have a new and hopeful path forward,” she says.

“Kathryn’s story demonstrates what is possible by using molecular profiling to determine the best treatment for patients with these hard-to-treat or rare cancers. By profiling these tumours in real time, gathering pediatric cancer experts together weekly from coast to coast to assess the results and using that information to inform a medical decision, we are developing what we believe is the cancer therapy of the future – molecular profiling for precision medicine,” says Dr. Malkin.

Currently, chemotherapy, surgery and radiation are the standard treatments for cancer and these can mean devasting side- and late effects. With Terry Fox PROFYLE, the approach is to treat each child’s tumour as an individual based on its molecular profile, and to use the results to access to a whole array of new drugs.

Dr. Malkin envisions a future when all children with cancer will have their tumours profiled as part of the standard of care so they, too, will benefit.

Of the tumours the Terry Fox PROFYLE team has analyzed to date, 43 per cent were sarcomas (Terry Fox had osteosarcoma), 23 per cent were brain cancers, 10 per cent were leukemias and lymphomas, 10 per cent neuroblastomas and 14 per cent other rare cancers.

Launched in 2017 by the Terry Fox Research Institute to find new treatments for the 20 per cent of children with cancer who do not respond well to treatment, Terry Fox PROFYLE has brought together, for the first time, a pan-Canadian collaboration of more than 30 pediatric cancer research and funding organizations and their experts to work together to guide diagnosis and treatment. This level of collaboration is unprecedented.

The research group aims to reach its recruitment goal of 450 in its remaining two years of study. The pan-Canadian project has patients enrolled at sites in all 10 provinces.



The Terry Fox Research Institute (TFRI), established in 2008, invests in world-class, collaborative cancer research teams and partnerships. Together with its research and funding partners, TFRI is working to inspire the transformation of cancer research in this country by bringing together leading cancer research and treatment organizations in Canada and empowering them under the framework of the Marathon of Hope Cancer Centres Network.


Kelly Curwin,
Chief Communications Officer, Terry Fox Research Institute; o: 604-675-8223; c: 778-237-8158

Dr. Malkin is available for interview: Oct. 2 and 3 after 3:30 p.m. EST and 9-10 am on Oct. 3 only.

Ms Stewart is available for interview on Oct. 2 (by phone only) from 4-5 pm and on Oct. 3 after 4 p.m. EST

To learn more about this program, visit