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PROFYLE: Understanding the Science

THE PROFYLE initiative has recruited many of Canada’s leaders in pediatric, adolescent and young adult cancer research and care from across Canada. Recognizing no geo-political boundaries, this remarkable collection of talent is driven by the sole purpose to improve the outcomes of young Canadians with high-risk cancers. To harness the collective knowledge and expertise, our multidisciplinary team of over 50 investigators and collaborators has been structured into thirteen interconnected nodes. 

Each node, which oversees the execution of one or more specific research projects, is chaired by members of the Program Executive Committee and ensures adherence to the project plan and timelines. The boundaries between the nodes are fluid with several members sitting on more than one node. These nodes include biobanking, clinical data repository, biomarkers, adolescent and young adults, genomics and bioinformatics, therapeutics, ethics, proteomics, model systems, clinical site leads, policy, sustainability and partnership, and patient, parent, and family node.


AYA Node

The Adolescent and Young Adults (AYA) Node, co-led by Drs. Lesleigh Abbott (Children’s Hospital of Eastern Ontario, Ottawa, Ontario), Jan-Willem Henning (Tom Baker Cancer Centre, Calgary, Alberta) and Sapna Oberoi (CancerCare Manitoba, Winnipeg, Manitoba) ensures seamless integration of patients whose ages are from 14 to 29 years into the program. The node is establishing partnerships with adult treatment centres and developing a process to access and share AYA patient data (genomes that have been sequenced as part of adult personalized oncology programs).

Biobanking Node

The Biobanking Node, co-led by Drs. Jonathan Bush and Suzanne Vercauteren (BC Children’s Hospital, Vancouver, British Columbia) is implementing a national standardized strategy for sample collection, preparation, and storage so that these samples can be used by PROFYLE investigators for further research.

Biomarkers Node

The Biomarkers Node, co-led by Drs. Nada Jabado (McGill University, Montreal, Quebec), Cynthia Hawkins (SickKids, Toronto, Ontario) and Paul Moorehead (Janeway Children’s Health and Rehabilitation Centre, St. John’s, Newfoundland), is developing profiling methods to allow for more accurate information about disease progression or regression, using less invasive ‘liquid biopsy’ samples from blood, urine or spinal fluid. These biomarkers may ultimately be used as surrogate diagnostic, prognostic, and therapeutic tools to replace the need for tissue biopsy.

Clinical Data Repository

The Clinical Data Repository, led by Dr. Jennifer Chan (University of Calgary, Calgary, Alberta), has built an online portal for patient referral/enrollment, and data capture and sharing with the PROFYLE network.

Clinical Site Lead Node

The Clinical Site Lead Node, led by Dr. Rod Rassekh (BC Children’s Hospital, Vancouver, British Columbia), is comprised of physicians from each treatment centre. They help to liaise between the treating physicians and the PROFYLE project. They ensure that the PROFYLE program runs at each site, recruiting/enrolling patients, collecting samples and entering data.

Ethics Node

The Ethics Node, led by Dr. Caron Strahlendorf (BC Children’s Hospital, Vancouver, British Columbia), has created a harmonized approach to recruitment, consent and return of results for all participant centres in the country. 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. 

Genomics and Bioinformatics Node

The Genomics and Bioinformatics Node, co-led by Drs. Adam Shlien (SickKids, Toronto, Ontario), Steven Jones (BC Genome Sciences Centre, Vancouver, British Columbia), and Guillaume Bourque (McGill, Montreal Quebec) have implemented a harmonized and integrated national tumour sequencing platform. Their focus is to provide real time sequencing to identify epigenetic and/or genetic drivers as treatment targets. Sequencing for patients in Quebec and the eastern provinces is done in Montreal, sequencing for patients in Ontario is performed in Toronto and sequencing for patients from Manitoba west is done in Vancouver. 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. 

Model Systems Node

The Model System Node, co-led by Drs. Jason Berman (CHEO, Ottawa, Ontario) and Donna Senger (Lady Davis Institute for Medical Research, Montreal, Quebec), has created a preclinical platform for high-risk pediatric cancers, including mouse and zebrafish animal models. By generating both genetically engineered and human cancer cell transplant systems, the Model Systems Node aims to improve our understanding of the molecular basis for malignant transformation, and screen for new functional therapeutic compounds to improve survival outcomes. The node will study disease and disease markers in multiple organisms and initiate the development of new therapeutic compounds and therapies.

Patient, Parent and Family Node

The Patient, Parent and Family Node, led by Mr. Patrick Sullivan (Team Finn Foundation, Vancouver British Columbia), Ms. Lorena Cook (Sarah’s Fund for Cedars, Montreal, Quebec) and Ms. Antonia Palmer (Kindred Foundation, Ontario), is made up of passionate patient advocates who are committed to working with the other nodes of PROFYLE to transform the care of children, adolescents and young adults with hard-to-cure cancer.

Policy Node

The Policy Node led by Dr. Avram Denburg (SickKids, Toronto, Ontario), is designing and conducting rigorous policy-relevant research to facilitate the implementation of precision oncology care for young people in Canada.

Proteomics Node

The Proteomics Node, co-led by Drs. Philipp Lange (BC Children’s Hospital, Vancouver, British Columbia) and Michael Moran (SickKids, Toronto, Ontario), is studying cancer specific changes in the protein machinery to reveal its weaknesses and devise new diagnostic tests. Integrating proteome analysis with genome analysis will provide a unique and powerful approach to defining each individual cancer at the molecular level and guiding selection of targeted treatments for each individual child.

Sustainability and Partnership Node

The Sustainability and Partnership Node, led by Mr. Patrick Sullivan (Team Finn Foundation, Vancouver, British Columbia), is engaged in (1) providing important advocacy support, (2) identifying partnership opportunities, and (3) raising funds.

Therapeutics Node

The Therapeutics Node co-led by Drs. Rebecca Deyell (BC Children’s Hospital, Vancouver, British Columbia), Daniel Morgenstern (SickKids, Toronto, Ontario) and Jim Whitlock (SickKids, Toronto, Ontario), is leading on translating sequencing results from PROFYLE into novel therapeutic options for affected patients. This includes mechanisms for accessing agents outside formal clinical trials; the development and implementation of ‘single patient studies’; expanding the portfolio of available international molecularly-targeted clinical trials in Canada; and working to develop novel clinical trial concepts. The members of the node have been working with industry, provincial and federal governments and Health Canada to expand access to novel agents for Canadian children, adolescents and young adult with cancer. They 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.

PROFYLE Committees

Molecular Tumor Board Committee

The Molecular Tumor Board Committee, chaired by Dr. Anita Villani (SickKids, Toronto, Ontario), has planned and implemented a national PROFYLE molecular tumour board initiative through which sequencing data generated from each patient sample is reviewed and evaluated by a multi-disciplinary team. A formal report is generated and shared with the treating oncologist to inform clinical management on an individual patient basis.

Enrollment Committee

The Enrollment Committee, Drs. David Malkin and Anita Villani (SickKids, Toronto, Ontario), Nada Jabado (McGill University) and Daniel Sinnett (CHU Sainte-Justine, Montreal, Quebec), and Rebecca Deyell and Rod Rassekh (BC Children’s Hospital, Vancouver, British Columbia), review and approve or reject each enrollment request submitted. The committee ensures that the potential PROFYLE patient meets eligibility criteria and that financial resources are available prior to the patient being informed about the opportunity to participate in PROFYLE.

Biospecimen and Data Access Committee

The Biospecimen and Data Access Committee, Drs. Suzanne Vercauteren (BC Children’s Hospital, Vancouver British Columbia), Jennifer Chan (University of Calgary, Calgary, Alberta), Jason Berman (CHEO, Ottawa, Ontario), Nada Jabado (McGill University, Montreal, Quebec), Daniel Sinnett (CHU Sainte-Justine, Montreal, Quebec), Steven Jones (BC Cancer/Genome Science Centre, Vancouver, British Columbia), Meredith Irwin, Cynthia Hawkins, Anita Villani and David Malkin (SickKids, Toronto, Ontario), review applications requesting access to PROFYLE biospecimens or data for secondary research purposes, as they are precious resources. The committee reviews each access requests from PROFYLE Team Members, PROFYLE Researchers and Third-Party Researchers who are wishing to access PROFYLE data or biospecimens and approve or deny the request based on criteria as laid out in the PROFYLE Data and Materials Access Policy.

Publication Committee

The Publication Committee, Drs. Rebecca Deyell and Caron Strahlendorf (BC Children’s Hospital, Vancouver, British Columbia), Nada Jabado and Ma'n Zawati (McGill University, Montreal, Quebec), Daniel Morgenstern and David Malkin (SickKids, Toronto, Ontario), review manuscripts and presentation of PROFYLE Team Members, PROFYLE Researchers and Third-Party Researchers in which PROFYLE biospecimen and/or data is included, prior to their submission for publication or presentation. This review is to ensure that publications and presentations are of the highest quality, safeguard the legitimate academic interests of the PROFYLE program and its researchers, and protect participants’ privacy.

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