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Terry Fox PROFYLE: 'Improving the outcomes of young people with cancer, one child at a time'

FOR THE FIRST TIME IN CANADIAN HISTORY, more than 30 pediatric cancer research and funding organizations have joined forces through Terry Fox PROFYLE, a pan-Canadian project to give children, adolescents and young adults who are out of conventional treatment options another chance to beat their cancer. 

Short for PRecision Oncology For Young peopLE, the Terry Fox Research Institute (TFRI) and these research and funding partners are working and fundraising together under a unique partnership that to date is providing a total of $16.4 million to molecularly profile the tumours of these patients, no matter where they live in Canada. For example, if Terry Fox had been diagnosed with cancer today, he would have been eligible for PROFYLE when the tumour returned and spread to his lungs. 

A $5-million investment by TFRI is the catalyst bringing together top scientists and clinicians, research centres, cancer charities and foundations at children’s hospitals across the country to create new hope for young people who need it the most. 

Terry Fox PROFYLE: How it works

PROFYLE_Map

THE TERRY FOX PROFYLE initiative has recruited many of Canada’s leaders in pediatric, adolescent and young adult cancer research and care. Our multidisciplinary team consists of more than 50 investigators and collaborators, all working to improve the outcomes of young Canadians with high-risk cancers. There are currently more than 30 patients from across Canada (all provinces represented) enrolled in PROFYLE, and the project eventually plans to enroll over 450 patients over the next four years. 

The Challenge 

There has been dramatic improvement in treatments and outcomes for many pediatric cancers over the last three decades. However, for the 20 per cent of young people whose cancers have spread, returned, or are resistant to treatment, outcomes remain grim. In fact, around 4,200 young Canadians between the ages of 0 to 29 will be diagnosed with cancer in 2017, and more than 700 of them will die from it. PROFYLE is a project for children and young adults who have been told they are out of treatment options, giving them another chance. 

Our Strategy

Research centres and top scientists and clinicians across Canada are – for the first time – working together to molecularly profile the tumours of young cancer patients. PROFYLE seeks to take advantage of the genomic revolution to look at the molecular composition of these cancers. Molecular profiling is a set of emerging biological tests that looks at an individual's cancer tumour, studying its genetic characteristics and any unique biomarkers. The information gathered will be used to identify and create therapies that are designed to target a specific cancer tumour profile so patients can enjoy a better quality of life and live longer. 

How It Works 

In the past, if a child battling cancer lived in a region without a molecular profiling site, accessing this was not an option. PROFYLE is breaking down barriers, giving young people who need it the most access to the best cancer care in Canada. For example, a child enrolled in the study will have his or her tumour sample sent to one of three profiling sites in Canada. The results are then discussed at a national tumour board – and if the patient meets criteria for a clinical trial suitable for their cancer they will be enrolled. 

Patient Enrolment 

Only oncologists can enroll patients in Terry Fox PROFYLE -- please check with your doctor for more information and to determine if your child, adolescent, or young adult (ages 0 to 29) meets the project's eligibility criteria. 

Terry Fox PROFYLE: Understanding the science

DNA Strand

THE TERRY FOX PROFYLE initiative has recruited many of Canada’s leaders in pediatric, adolescent and young adult cancer research and care. Our multidisciplinary team consists of over 50 investigators and collaborators, all working to improve the outcome of young Canadians with high risk cancers. To make the most of the collective knowledge and expertise of our large and talented group, PROFYLE has been structured into committee groups, referred to as nodes. 

Each committee oversees the execution of one or more specific research projects, and is chaired by a member of the Program Executive Committee (PEC) who makes sure that the node follows the project plan and timelines. The nodes will be interlinked, with several members sitting on more than one committee.

Genomics and Data Analysis Node

The Genomics and Data Analysis Node will oversee the planning and implementation of a pan-Canadian personalized medicine platform for high-risk pediatric cancer patients.This team will also co-ordinate and execute computer-based analyses and will be responsible for sharing clinical data and analytical technologies within the PROFYLE group. 

Biobanking Node

The Biobanking Node will implement a cross-country strategy for tissue collection, preparation, and storage, ensuring there is uniformity in all processes from coast to coast.

Ethics Node

This node will establish and implement ethics guiding principles and processes, including ensuring that patients are aware of their medical results, as well as the context of the genomic individual findings, both targeted and incidental. 

Site Lead Node

This node is comprised of physicians from each treatment centre. They help to liaise between the treating physicians and the Terry Fox PROFYLE project. 

Biomarker Node

This node will develop tools to identify molecular tumour signatures, or collections of genes, proteins, and genetic variants that can be used as a marker for detecting disease in liquid biopsies, such as blood. 

Proteomics and Metabolomics Node

Using the proteome, or a set of proteins expressed by an individual at a certain time, to study disease and identify new biomarkers, is the focus of this node. 

Model System Node

The Model System Node will study disease and disease markers in multiple organisms and initiate the development of new therapeutic compounds and therapies.

Partnership and Advocacy Node

This group is engaged in raising funds, identifying partnering opportunities, and providing important advocacy support. Leader: Patrick Sullivan, childhood cancer research advocate and the president/founder of the Team Finn Foundation in Vancouver, B.C.

AYA Node

The AYA (Adolescent and Young Adult) Node will ensure seamless integration of 14 to 29-year-old patients into the program. The node will encourage the enrolment of AYA patients in the PROFYLE program, and will also establish a process to access AYA patient data whose genomes have been sequenced as part of adult personalized oncology programs.

Clinical Node

The Clinical Node will help to improve access to existing or new therapies in the context of clinical trials. This node will help navigate the challenges of clinical trials in Canada and the US. Current members of the PROFYLE team are well connected to Canadian pediatric and AYA clinical trial networks, which will facilitate the process

Terry Fox PROFYLE: Important information for families

MarlowTanya

TERRY FOX PROFYLE (PRecision Oncology For Young peopLE ) is a pan-Canadian research project for children and young adults ages 29 and under who have been told they are out of treatment options, giving them another chance.

Only oncologists can enroll patients in Terry Fox PROFYLE -- please check with your doctor for more information. Your oncologist can work with the site leads listed below to determine if your child meets the project's eligibility criteria. 

PEDIATRIC AND AYA SITES

IWK Health Centre
Halifax, Nova Scotia

Dr. Conrad Fernandez

Janeway Children's Health and Rehabilitation Centre
St. John's, Newfoundland

Dr. Paul Moorehead

Children's Hospital of Eastern Ontario
Ottawa, Ontario

Drs. Donna Johnston, Lesleigh Abbott and Raveena Ramphal

Children’s Hospital London Health Sciences Centre
London, Ontario

Dr. Alexandra Zorzi

Kingston General Hospital
Kingston, Ontario

Dr. Laura Wheaton

McMaster Children's Hospital
Hamilton, Ontario

Dr. Carol Portwine

The Hospital for Sick Children
Toronto, Ontario

Dr. Anita Villani

Saskatoon Cancer Centre
Saskatoon, Saskatchewan

Dr. Christopher Mpofu

CancerCare Manitoba
Winnipeg, Manitoba

Dr. Geoff Cuvelier

Alberta Children's Hospital
Calgary, Alberta

Dr. Victor Lewis

Stollery Children's Hospital
Edmonton, Alberta

Dr. Paul Grundy

British Columbia Children's Hospital
Vancouver, British Columbia

Drs. Rod Rassekh and Rebecca Deyell

CHU de Québec (Laval University)
Québec, Québec

Dr. Lamia Naccache

Montreal Children’s Hospital (McGill University)
Montreal, Québec

Dr. Nada Jabado

CHU Sainte-Justine (University of Montreal)
Montreal, Québec

Dr.Thai Hoa Tran

CHU de Sherbrooke (Sherbrooke University)
Sherbrooke, Québec

Dr. Josée Brossard

 

Terry Fox PROFYLE Team

Dr. David Malkin, Program Director

malkin_david_cropppedDr. David Malkin is leading the PROFYLE initiative as Program Director. He is a professor in the Department of Pediatrics, University of Toronto, and oncologist and senior scientist at The Hospital for Sick Children (SickKids). He also holds the Pediatric Oncology Group (POGO) Chair in Childhood Cancer Control at the University of Toronto. Dr. Malkin is recognized internationally for his landmark contributions to the field of pediatric cancer genetics.

Mr. Patrick Sullivan, PROFYLE Co-Chair, Leader - Partnership and Advocacy Node

Patrick Sullvan Patrick Sullivan is a passionate childhood cancer research advocate, and the president and founder of the Team Finn Foundation, a volunteer-based organization dedicated to raising funds for cutting edge pediatric cancer research. Since 2009, the foundation has raised well over $2-million for pediatric cancer research. In addition, Patrick is a board member of the Canadian Cancer Research Alliance, a member of TFRI’s Pacific Regional Advisory Committee and is an advocate on the Stand Up to Cancer‐St. Baldrick’s Pediatric Cancer Dream Team. Professionally, Patrick is a securities and corporate‐commercial litigator based in Vancouver, B.C.

PROGRAM EXECUTIVE COMMITTEE

The Program Executive Committee (PEC) is responsible for planning and managing all of PROFYLE program activities. The twelve member committee will meet regularly to review progress and finances, plan necessary program changes and identify solutions to problems that might arise in the course of the program. Each of the project research nodes (groups that oversee the activities of one or more PROFYLE research projects), is chaired by a member of the PEC.

BRITISH COLUMBIA

Dr. Rebecca Deyell, Clinical Node

Deyell RebeccaDr. Rebecca Deyell is a pediatric oncologist, Clinical Assistant Professor and Clinician Investigator in the Division of Pediatric Hematology / Oncology / BMT at BC Children's Hospital and the Michael Cuccione Childhood Cancer Research Program at the BCCH Research Institute. Dr. Deyell's research interests include developmental therapeutics and early phase clinical trials in pediatric oncology as well as personalized oncogenomics as part of the BC Pediatric Personalized Oncogenomics (POG) study.

Dr. Poul Sorensen, Proteomics Node

Dr. Poul Sorensen croppedDr. Poul Sorensen is Johal Endowed Chair in Childhood Cancer Research and Professor of Pathology at the University of British Columbia. He is Chair of the Translational Research Committee of the Children's Oncology Group. Dr. Sorensen is also PI of the Genome Canada/CIHR/C17 Canadian Pediatric Cancer Genome Consortium, using next‐generation sequencing to identify drivers in high‐risk childhood cancers. His group has discovered many novel translocation‐associated alterations in childhood cancer, and recently identified pathways underlying the adaptation of tumours to cellular stress.

Dr. Steven Jones, Genomics and Data Node

steven-jonesSteven Jones is a Professor, FRSC, FCAHS Associate Director and Head of Bioinformatics at the BC Cancer Agency's  Michael Smith Genome Sciences Centre. Dr. Jones is also Professor of Medical Genetics at the University of British Columbia Professor, Molecular Biology & Biochemistry, Simon Fraser University

Dr. Rod Rassekh, Site Lead

Dr. Rod Rassekh croppedDr. Rod Rassekh is a clinician at the BC Children and Women’s Hospital, Associate Clinician Scientist at the Child and Family Research Institute and Clinical Assistant Professor in the Division of Oncology at the University of British Columbia. Dr. Rassekh's reasearch interest is in the treatment and long term outcomes of children treated for cancer, with a specific focus on quantifying what complications are seen in survivors of childhood cancer.

ALBERTA

Dr. Jennifer Chan, Biobanking Node

Dr. Jennifer Chan croppedDr. Jennifer Chan is a neuropathologist and Assistant Professor of Pathology at the University of Calgary. She was previously Pathology Leader of the Biological Samples Platform at the Broad Institute (MIT/Harvard), overseeing development of its tissue repository, and contributed to the experimental design and execution of all tissue‐based cancer projects. Dr. Chan directs the Brain and Pediatric Tumour Bank at the University of Calgary, including the development of unique live cell resources.

Dr. David Eisenstat, Model System Node

Dr. David Eisenstat croppedDr. Eisenstat is a professor in the Departments of Pediatrics and Medical Genetics at the University of Alberta and the Division Director of Pediatric Hematology/Oncology/Palliative Care at the Stollery Children’s Hospital. He is also a consultant to the Brain Tumour Group at the Cross Cancer Institute and a member of the Alberta Provincial Neuro‐Oncology Tumour Group. 

Dr. Paul Grundy, AYA Node

Paul

Paul obtained an MD and Pediatric specialty training in Edmonton, and Hematology/Oncology fellowship and initial research training at the Children’s Hospital of Philadelphia. He has spent the last 24 years in Edmonton, 16 of those as Director of Pediatric Hematology/Oncology at the University of Alberta/Stollery Children’s Hospital.

ONTARIO

Dr. Cynthia Hawkins, Biomarker Node

Dr. Cynthia HawkinsDr. Hawkins obtained her PhD in 1996 and her MD in 1997 from the University of Western Ontario. She completed her residency training in neuropathology at the University of Toronto in 2002, including a post-doctoral fellowship at the University of Zurich. Dr. Hawkins joined The Hospital for Sick Children (SickKids) as a neuropathologist in 2002 and has been appointed at the Research Institute in the Cell Biology program since 2004. She is a principal investigator at the Arthur and Sonia Labatt Brain Tumour Research Centre and a Professor at the University of Toronto.

Dr. Michael Taylor, Model System Node

Taylor_MichaelDr. Michael Taylor is a pediatric neurosurgeon at the Hospital for Sick Children (SickKids) where he practices general paediatric neurosurgery, with a special focus on paediatric neuro-oncology. Dr. Taylor is also a principal investigator at the Arthur and Sonia Labatt Brain Tumour Research Centre, where his laboratory group focuses on the molecular genetics of medulloblastoma and ependymoma, two of the most common malignant paediatric brain tumours.

Dr. James Whitlock, Clinical Node

Dr. James WhitlockDr. James A. Whitlock is the Division Head and Women’s Auxiliary Millennium Chair in Haematology/Oncology and Director of the Garron Family Cancer Centre at The Hospital for Sick Children, Senior Associate Scientist in the Child Health Evaluative Sciences Program at the SickKids Research Institute, and Professor of Paediatrics at the University of Toronto.

Dr. Meredith Irwin, Model System Node

Dr. Meredith Irwin croppedDr. Meredith Irwin is a pediatric oncologist and clinician-scientist at the Hospital for Sick Children (SickKids) and Associate Professor in the Department of Paediatrics & Institute of Medical Sciences at the University of Toronto. Dr. Irwin's main areas of research are p53-family protein biology, signaling, apoptosis, and neuroblastoma. Her neuroblastoma studies include the identification of signaling pathways involved in cell survival and invasion, identification of drug targets and therapies through functional screens, and cellular and animal models of metastatic neuroblastoma.

Dr. Adam Shlien, Genomics and Data Node

Shlien_AdamDr. Shlien's research uses the tools of modern sequence-based genomics to discover the mutations that are present in the genomes of paediatric cancer patients, and to understand how these mutations alter the somatic transcriptome. He has a strong interest in sarcoma biology, and is directly involved with the  introduction of cutting-edge genomics, such as whole genome sequencing, into clinical practice.

Abha Gupta, AYA Node

Abha GuptaDr. Abha Gupta received her MD at the University of Toronto.  She completed her pediatrics residency at Yale New Haven Children’s Hospital (New Haven, CT) and Children’s Hospital of Eastern Ontario (Ottawa) before moving back to Toronto to complete her fellowship in paediatric hematology/oncology at The Hospital for Sick Children.  To complement her training, Dr. Gupta completed a one-year fellowship in Adolescent and Young Adult Oncology with a focus on sarcoma.  She is currently cross appointed as a staff oncologist at The Hospital for Sick Children and Princess Margaret Cancer Centre.  

QUEBEC

Dr. Nada Jabado, Biomarker Node

Dr. Nada Jabado croppedDr. Jabado is a professor in the Division of Hematology/Oncology at Montreal Children’s Hospital, McGill University. Her research focuses on genetic/genomic basis of pediatric high grade brain tumours for which she was recently awarded a large multi‐centre Genome Canada grant. She was awarded the 2012 CCS William E. Rawls Award.

Dr. Daniel Sinnett, Genomics Node

Dr. Daniel Sinnett croppedDr. Daniel Sinnett is a professor in the Departments of Pediatrics and Biochemistry at the University of Montreal and holds the François-Karl Viau Research Chair in Pediatric Oncogenomics. Dr. Sinnett is currently spearheading two Canadian childhood leukemia initiatives aimed at using next-generation sequencing technologies to fully characterize the genomic determinants of childhood acute lymphoblastic leukemia. His group has made significant contributions in the understanding of genetic determinants of childhood leukemia both at the gene and at the genomic levels.

NOVA SCOTIA

Dr. Jason Berman, Model System Node

Berman JasonDr. Jason Berman is Associate Professor and Clinician Scientist in Pediatric Oncology at Dalhousie University. Dr. Berman's lab uses the zebrafish model to study mast cell biology and model human cancers. His group has pioneered a human zebrafish cancer xenograft platform to study tumour-drug responses and interaction with the microenvironment. They also study genotype-phenotype correlations in rare genetic diseases.

Dr. Conrad Fernandez, Ethics Node

Dr. Conrad FernandezDr. Conrad Fernandez is a professor at Dalhousie University and Head, Division of Pediatric Hematology/Oncology, Departments of Pediatrics and Bioethics, at IWK Health Centre. He is vice‐Chair of the COG Bioethics committee and co‐Chair of the Children’s Oncology Group Return of Research Results committee. His research focuses on the return of research results to participants, both as a summary of results and more recently in the context of genomic individual targeted and incidental findings. He was the lead GE3LS researcher in two Genome Canada funded consortia (The Canadian Pediatric Cancer Genome Consortium [CPCGC] and Identifying New Genes and Medicines for the Treatment of Orphan Diseases [IGNITE]).

Terry Fox PROFYLE: Contacts

Fundraising

To join the PROFYLE fundraising initiative or for more information about fundraising opportunities, please contact:

Ms. Heather Scott
Director of Development
The Terry Fox Foundation 
Phone: 604-239-8579
Email: heather.scott@terryfox.org

Parent Questions

For any questions about enrolling your child in Terry Fox PROFYLE, speak to your oncologist or email: 
info@profyle.ca

Partnerships

If your organization is interested in partnering with PROFYLE, or for more information about partnership opportunities, please contact:

Mr. Patrick Sullivan 
pjs@tvsbarristers.com

Communications

For communications materials (photographs, fact sheets) please contact: 

Kelly Curwin
Chief Communications Officer 
The Terry Fox Research Institute 
Phone: 604-675-8223 
Cell: 778-237-8158
Email: kcurwin@tfri.ca

Ms. Katherine Koyko 
Director of Marketing & Communications
The Terry Fox Foundation 
Phone: 604-239-8582 
Cell: 604-803-2252 
Email: katherine.koyko@terryfox.org