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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 funding support 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


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 300 patients from across Canada (all provinces represented) enrolled in PROFYLE, and the project plans to continue enrolling patients from every province.

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 molecular 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 Bioinformatics Node

The Genomics and Bioinformatics 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. 

Biomarkers 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 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 Systems Node

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

Partnership, Sustainability 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.

Therapeutics Node

The Therapeutics 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: Partners


Funding Partners and Donors


British Columbia





Nova Scotia



Research Partners

British Columbia






Nova Scotia


Industry research partners

Terry Fox PROFYLE: Important information for families


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. 


British Columbia Children's Hospital
Vancouver, British Columbia

Drs. Rod Rassekh and Rebecca Deyell

BC Cancer
Vancouver, British Columbia

Drs. Alannah Smrke and Janessa Laskin

Alberta Children's Hospital
Calgary, Alberta

Dr. Victor Lewis

Stollery Children's Hospital
Edmonton, Alberta

Drs. Paul Grundy and Lucie Pecheux

Saskatoon Cancer Centre / Jim Pattison Children's Hospital
Saskatoon, Saskatchewan

Dr. Christopher Mpofu

CancerCare Manitoba
Winnipeg, Manitoba

Dr. Geoff Cuvelier and Issai Vanan

Children's Hospital of Eastern Ontario
Ottawa, Ontario

Drs. Donna Johnston, Lesleigh Abbott, Sarah Sawyer 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

University Health Network (Princess Margaret Cancer Centre)
Toronto, Ontario

Drs. Mark Minden, Philippe Bedard, Warren Mason and Christine Elser

Sinai Health (Mount Sinai Hospital)
Toronto, Ontario

Dr. Rebecca Gladdy

CHU de Québec (Laval University)
Québec, Québec

Drs. Lamia Naccache and Raoul Santiago

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

Drs. Nada Jabado and Catherine Goudie

McGill University Health Centre
Montreal, Québec

Dr. Thierry Alcindor

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

Drs. Thai Hoa Tran and Nicolas Prud-homme

CHU de Sherbrooke (Sherbrooke University)
Sherbrooke, Québec

Dr. Josée Brossard

IWK Health Centre
Halifax, Nova Scotia

Dr. Stephanie Villeneuve

Janeway Children's Health and Rehabilitation Centre and Dr. H. Bliss Murphy Cancer Centre
St. John's, Newfoundland

Drs. Paul Moorehead, Erin Powell and Jacqueline Costello


Terry Fox PROFYLE Team

2022 PROFYLE Annual Team Meeting
Picture from the 2022 Annual PROFYLE Team Meeting held in January 2022.

Dr. David Malkin, Program Director

Malkin_David_EDIT_PROFYLEDr. 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, Sustainability 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.


The Program Executive Committee (PEC) is responsible for planning and managing all of PROFYLE program activities. The PEC meets 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.


Dr. Rebecca Deyell, Therapeutics 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. Philipp Lange, Proteomics Node

Lange_Philipp_CROPPEDDr. Philipp Lange is an Assistant Professor in the Department of Pathology and Laboratory Medicine at UBC and Investigator at the BC Children’s Hospital and BC Cancer Research Centre. As Canada Research Chair in ‘Translational Proteomics of Pediatric Malignancies’ he heads an integrated cancer biology, proteomics and bioinformatics driven research program investigating the molecular basis and new treatment avenues in childhood cancer. Dr. Lange’s vision is to broaden personalized medicine from a genomics focus to include protein dynamics. Through his research focus on the origin, mechanistic role, and clinical application of oncoproteoforms (proteins modified by cancer pathologies), he aims to improve precision therapies for young people with cancer, based on the patient’s individual physiology rather than their cancer’s genetics alone.

Dr. Steven Jones, Genomics and Bioinformatics 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, Clinical Site Node 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 research 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.

Dr. Suzanne Vercauteren, Biobanking Node

Vercauteren_CroppedDr. Suzanne Vercauteren is a Clinical Associate Professor in the Department of Pathology and Laboratory Medicine in the Faculty of Medicine at UBC, Head of the Department of Pathology and Laboratory Medicine, Hematological Pathologist and Investigator at the BC Children’s Hospital.  In addition, she is the Director of BC Children’s Hospital BioBank at BC Children’s Hospital. Dr. Vercauteren’s main research area of interest is biobanking and public education and engagement in research participation.


Dr. Caron Strahlendorf, Ethics Node

Strahlendorf_Caron_CROPPEDDr. Caron Strahlendorf is the Division Head of the Division of Hematology, Oncology & Bone Marrow Transplantation at BC Children’s Hospital and is a Clinical Professor in the Division of Pediatric Oncology/Hematology/Bone Marrow Transplant, Department of Paediatrics at the University of British Columbia. Her research focuses on stem cell research (processes that will allow maximal efficient cell harvest in very young children), potential of product manipulation related to dendritic and cellular therapies, returning research results to research participants, and issues highlighting cross-cultural care as well as the psychosocial issues that present to the patients and families within different cultural populations.


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. Jan-Willem Henning, Adolescent and Young Adult (AYA) Node

Henning_Jan-WillemDr. Jan-Willem Henning is a Medical Oncologist at the Tom Baker Cancer Centre, Calgary Alberta and Clinical Assistant Professor, Cumming School of Medicine, University of Calgary. He received his medical degree (MBChB) in 1999 from the University of Orange Free State, South Africa and after immigrating to Canada; he received his certification of specialty training in Internal Medicine and Medical Oncology at the Royal College of Canada (FRCPC). His areas of clinical expertise include Breast Cancer, Sarcoma and Adolescent and Young Adult (AYA) Oncology. Dr. Henning is the immediate past program director for the medical oncology residency program in Calgary, and currently serves as the vice-chair for the Royal College Subspecialty Training Program for Medical Oncology. His research interest includes leading therapeutic clinical trials, health services research in AYA-oncology, Breast Cancer and Sarcoma. He is the AYA-oncology medical lead in Southern Alberta and co-chair of the Systemic Treatment Council at the Tom Baker Cancer Centre.


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. Lesleigh Abbott, Adolescent and Young Adult (AYA) Node

Abbott_LesleighDr. Lesleigh Abbott is a Pediatric Hematologist/Oncologist at the Children’s Hospital of Eastern Ontario (CHEO) and an Assistant Professor at the University of Ottawa. Her oncology expertise is in sarcomas, lymphoma, adolescents and young adults with cancer and post-bone marrow transplants. Her current research focuses on quality of life in early phase clinical trials, the development and implementation of early phase clinical trials as well as access to clinical trials for adolescents and young adults. She is actively involved in the PROFYLE project as a co-clinical site lead at CHEO and involvement in the therapeutic node. She is also interested in differences between AYAs and younger patients in terms of side effects to treatment and barriers to clinical trial enrolment. Dr. Abbott is a researcher at the CHEO Research Institute and the Principal Investigator on a C17 study looking at quality of life in phase 1 studies. Dr. Abbott recently co-chaired a task force on the relapse registry for C17 through her work on the C17 Developmental Therapeutics committee. Finally, she is the Program Director for our subspecialty residency program as well as a mentor to fellows, residents and medical students at the University of Ottawa.

Dr. James Whitlock, Therapeutics 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 Systems 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 Bioinformatics 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.

Dr. Jason Berman, Model Systems Node

Berman JasonDr. Jason Berman is the CEO and Scientific Director of Children’s Hospital of Eastern Ontario Research Institute (CHEO RI) and the VP Research of CHEO. 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. Anita Villani, Molecular Tumour Board Committee

Villani_AnitaDr. Anita Villani is an Associate Staff Oncologist in the Division of Haematology/Oncology at The Hospital for Sick Children, an Assistant Professor in the Department of Paediatrics at the University of Toronto, and the Associate Director of the SickKids Precision Oncology Research Program (“KiCS”). Dr. Villani’s clinical and research interest is in cancer genetics and predisposition, including the creation and evaluation of surveillance strategies for cancer-prone children, using both traditional and novel approaches. She is interested in exploring the clinical utility of genomic findings, describing novel germline susceptibility genes and pathways, and exploring the ethics and the stakeholder experience of precision oncology research.

Dr. Michael Moran, Proteomics Node

Moran_MichaelDr. Michael Moran is a Senior Scientist in Cell Biology at the SickKids Research Institute, a Professor in the Department of Molecular Genetics at the University of Toronto, and an Affiliate Scientist at Princess Margaret Hospital, Ontario Cancer Institute, University Health Network. Dr. Moran’s research interests include integrating proteomics and functional genomics datasets in order to define and stratify cancers according to their distinctive molecular signatures. Underlying signal transduction and metabolic networks, and their regulation by post-translational modifications, are then molecularly characterized for their contributions to cancer phenotypes. In addition, his research has focused on the intracellular signaling networks that control growth, survival, and spreading of tumours, and how drugs may be designed to target key components in these molecular networks. His group uses proteomics technologies including mass spectrometry and bioinformatics to identify and characterize proteins activated in cancers, and to determine drug mechanisms of action.

Dr. Daniel Morgenstern, Therapeutics Node

Moran_MichaelDr. Daniel Morgenstern is a Staff Physician in the Solid Tumour Section, Medical Director of the Oncology & BMT/CT Clinical Trials Support Unit, Director of the New Agent and Innovative Therapy Program (NAIT), and Director of the Therapeutic MIBG Program in the Division of Haematology/Oncology at the Hospital for Sick Children, an Associate Scientist in Translational Medicine at the SickKids Research Institute, and an Assistant Professor in the Department of Paediatrics at the University of Toronto. Dr. Morgenstern’s research interests include novel therapies and clinical trials for high-risk neuroblastoma patients, early phase clinical trials, and the use of immune checkpoint inhibitors and immunotherapy for hypermutant childhood cancers

Dr. Avram Denburg, Health Technology Assessment/Pharmaceutical Policy/Drug Access

72022-Avram DenburgDr. Avram Denburg is a staff oncologist and clinician-scientist in the Division of Hematology/Oncology at the Hospital for Sick Children. He has a Master of Science in Health Policy, Planning and Financing from the London School of Economics, and a PhD in Health Policy from McMaster University. Dr. Denburg’s research centres on the analysis and strengthening of childhood cancer care systems, with specific focus on issues related to pharmaceutical policy, health technology assessment, and drug access. Dr. Denburg is Immediate Past Chair of the Essential Medicines Committee for the International Society of Pediatric Oncology, Chair of the Drugs & Therapeutics Committee at The Hospital for Sick Children. He serves as an expert member of the pan-Canadian Oncology Drug Review for the Canadian Agency for Drugs and Technologies in Health and the Ontario Steering Committee for Cancer Drugs. Dr. Denburg currently leads a Terry Fox Research Institute-funded program of research to develop a national policy framework for access to precision cancer therapies for children and youth in Canada.

Antonia Palmer, Patient, Parent and Family Node

Palmer_Antonia_Cropped Antonia Palmer is a childhood cancer research advocate and Executive Director of Kindred Foundation, a charity focused on funding childhood cancer research, youth mental and physical health, and community programs.  She is the co-founder of Advocacy for Canadian Childhood Oncology Research Network (Ac2orn), Chair of the CHEER Patient and Family Advisory Committee, research advocate for the St. Baldrick’s-Stand Up to Cancer Phase 2 Pediatric Cancer Dream Team, BioCanRx board member, and volunteers for other cancer focused organizations and projects in Canada and internationally.  Antonia holds a master’s degree in Systems Design Engineering from the University of Waterloo and lives in Ontario with her husband Aaron and three beautiful boys, Nate, Alex and Jonathan.


Dr. Nada Jabado, Biomarkers 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, Bioinformatics 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.

Dr. Donna Senger, Model Systems Node

Senger_Donna_CroppedDr. Donna Senger is an Associate Professor in the Gerald Bronfman Department of Oncology at McGill University, a Senior Scientist at the Lady Davis Institute for Medical Research, and an Adjunct Professor in the Department of Oncology at the University of Calgary. Dr. Senger has had a long-standing interest in the development of pediatric and adult central nervous system (CNS) tumours including defining the molecular characteristics of invasive glioma, investigating cancer stem cells as a therapeutic target, and understanding how the brain microenvironment impacts treatment. More recently, Dr. Senger’s research has focused on mechanisms important for the development of organ selective cancer metastasis, establishing in vivo cancer models for preclinical testing and identification and implementation of therapeutics for the treatment of sarcoma and metastatic melanoma. 


Dr. Stephanie Villeneuve, Policy Node and Adolescent and Young Adult (AYA) Node

Villeneuve_StephanieDr. Stephanie Villeneuve is a Pediatric Hematologist/Oncologist and Assistant Professor at Dalhousie University and the IWK Health Centre.  Before moving to Halifax in 2020, she completed her fellowship in Hematology/Oncology at The Hospital for Sick Children.  She is the Clinical Site Lead for PROFYLE at the IWK, and subsequently joined the Adolescent and Young Adult (AYA) and Policy Nodes.  She has a strong interest in the care of patients with leukemia, lymphoma, and bone marrow transplant.  Her research interests are in AYA oncology, supportive care, and quality improvement.


Dr. Paul Moorehead, Biomarkers Node

Moorehead_Paul_croppedDr. Paul Moorehead is a Pediatric Hematologist/Oncologist in the Section of Pediatric Hematology/Oncology at Janeway Children’s Health and Rehabilitation Centre and a Clinical Assistant Professor in the Discipline of Pediatrics in the Faculty of Medicine at Memorial University.  His research areas of interest are pediatric oncology, the care of newborns with bleeding disorders, and pediatric thromboembolic disease.

PROFYLE Vitual Team Meeting January 2021 (1)
Picture from the 2021 PROFYLE Virtual Face-to-Face Team Meeting held in January 2021.
2019 PROFYLE F2F Meeting
Picture from the 2019 PROFYLE Face-to-Face Team Meeting held in Winnipeg, MB on May 28, 2019.

Terry Fox PROFYLE: Contacts


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

Mr. Clark Vallis
Director, Strategic Partnerships
The Terry Fox Foundation 
Phone: 647-346-2352

Patient/Family Questions

For any questions about enrolment in Terry Fox PROFYLE, please speak to your oncologist or email:


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

Mr. Patrick Sullivan


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

Speakers and Presentations

Upcoming Events

  • September 13, 2022 – Presentation by Dr. Sam Behjati
  • September 19, 2022 – Presentation by Professor Melanie Calvert

Past Events

May 3, 2022


Molecular Characterization for Pediatric Cancer Precision Oncology

Presented by Dr. Elaine Mardis
Co-Executive Director, Institute for Genomic Medicine, Steve and Cindy Rasmussen Endowed Chair in Genomic Medicine, Nationwide Children’s Hospital 

February 8, 2022


Parents’ and patients’ experiences of a precision medicine trial for high-risk childhood cancer: Hopes, concerns, expectations, satisfaction and regret

Presented by Prof. Claire Wakefield,
Director, Behavioural Sciences Unit, Kids Cancer Centre, Sydney Children’s Hospital

February 1, 2022


Pediatric Genomics and Recontact

Presented by Dr. Bartha Maria Knoppers
Professor, Centre of Genomics and Policy, McGill University

Terry Fox PROFYLE: Information for Researchers

Request Data and/or Biospecimen

Data / Biospecimen Access Requisition Application Form

This Data / Biospecimen Access Requisition Application Form is to be completed by researchers to request access to data and / or biospecimen that have been collected or generated as part of PROFYLE.


Please complete the form that can be found at to request an email to be sent to you with a link to a Data/Biospecimen Access Requisition Application form that can be completed online.


Please contact the PROFYLE Program Office ( to request for an email to be sent to you with a link to a Revision Application Form or a Renewal Application Form that can be completed online.

PROFYLE Policies Please contact the PROFYLE Program Office ( for access to policies including the PROFYLE Data and Material Access Policy, Publication Policy, Intellectual Property Policy and other applicable PROFYLE Policies. 

Biospecimen Sample Information

Biospecimen Database

The biospecimen database contains information on samples available in the PROFYLE regional biobanks, as well as the Calgary - Clark Smith Biobank and the BC Children’s Hospital BioBank.

Please contact the Access Contact identified for each sample to request any additional information needed.

In addition to the sample types listed in the database, individual Biobanks may have other sample types available. For example, samples from autologous stem cell harvests are available for some patients in the BC Children’s Hospital BioBank.