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).
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.
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.
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.
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.
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.
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.