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Identifying Increased Risk for a Cancer Predisposition Syndrome

Posted on September 13, 2019 by Claire Slaughter

This POGO-funded research is helping children with its early detection of cancer predisposition syndromes.

Approximately 10% of children diagnosed with cancer have an underlying cancer predisposition
syndrome (syndrome), a condition (often inherited) that increases their risk of developing one or many cancers throughout their life. Genetic testing can be used to identify children with a syndrome, but to avoid unnecessary testing and possible delays, physicians need a way to determine which children to test.

There are over 125 syndromes known to be associated with cancer in children. In some cases, knowing whether a child has a specific syndrome will change the treatment. Identifying a syndrome also allows the healthcare team to develop a care plan to monitor the child for future cancers once treatment is complete, and to recommend monitoring for siblings.

In 2017, Dr. Catherine Goudie was awarded a POGO fellowship for her project “Identifying Children at Increased Risk for a Cancer Predisposition Syndrome: The McGill Interactive Pediatric Oncogenetic Guidelines.” Overseen by principal investigators Dr. David Malkin and Dr. William Foulkes, the project aims to develop an e-Health tool that doctors can use to help them decide which children should be referred for genetic testing.

Related Story : A Genetic Mutation: A Lifetime of Cancer Screening

Prior to becoming a POGO Fellow, Dr. Goudie and her team in Montreal spent three years building
approximately 90 algorithms for each type of childhood cancer. These yes/no questions relate to
items such as the age of the child, features of the tumour and family history. The first version of the
tumour algorithms was reviewed by genetic and oncology experts from Canada, the United States
and the United Kingdom.

The aim of the POGO-funded research was to support Dr. Goudie in her work to evaluate the performance of the tool with children at 11 Canadian hospitals. The evaluation was split into two streams.

Dr. Catherine Goudie, MD, FRCPC

“Our first priority was making sure this tool would do no harm,” says Dr. Goudie. “In order to do this, we looked at patients in Canada who have already been diagnosed with a cancer predisposition syndrome and who developed a cancer in childhood, meaning their physicians successfully identified the syndrome without our tool. We confirmed that our algorithms would have identified these children for genetic referrals at the time of their cancer diagnosis, therefore confirming that the tool performs at least as well as clinicians have.”

The second stream of the evaluation is ongoing and leverages precision medicine research at The Hospital for Sick Children and other hospitals in Canada and the US. These institutions are doing comprehensive genetic sequencing on pediatric cancer patients, meaning that all children undergo genetic evaluation regardless of whether they are suspected to have a syndrome.

“We will test our algorithm on the medical profiles of these children to determine if the tool indicates that the child should be referred for genetic assessment. We will then compare our results with those obtained from the patients who participated in the comprehensive genetic sequencing. Therefore, we are prospectively testing the performance of our tool.”

Dr. Goudie explains that, in most hospitals worldwide, the facilities, human resources, infrastructure, expertise, or funding to offer comprehensive genetic testing in all kids diagnosed with cancer are not available. Ultimately, the goal of the tool is to give children with a syndrome the opportunity to be diagnosed and treated appropriately. In addition, the tool can be used to educate medical professionals around the world.

Dr. Catherine Goudie received a prestigious clinical investigator award from the FRQ-S in Quebec and returned to Montreal in July 2018 to continue this research as a collaboration between the Montreal Children’s Hospital and The Hospital for Sick Children. The FRQ-S is a government organization that, annually, funds select clinician investigators in Quebec to do health research.

“For someone young like me, who doesn’t have a lot of experience, having POGO to support my work was a huge stepping stone. I am certain that POGO’s support and the credibility that this organization has internationally, helped me get this next award in Quebec. I am really grateful for this opportunity.”


This story was featured in POGO’s 2018 Community Impact Report.
Check out and download the MIPOGG App now.

Posted in Misc, Research | Tagged cancer predisposition syndrome, genetic sequencing, research, research grants

The Power of Population-based Research

Posted on September 8, 2016 by Kelly Zorzi

Dr. Jason PoleIn 1995, POGO’s childhood cancer database (POGONIS) transformed into a fully networked information system. This has allowed us to observe the population, know if certain cancers are increasing in incidence, monitor treatment, follow survival, and understand how these things change over time. In 2004, POGO was designated one of just eight 45.1 entities under Ontario’s Personal Health Information Protection Act, allowing POGO to collect, use and disclose personal health information, including the ability to link its database to other administrative databases, plan for Ontario’s pediatric oncology system and launch invaluable research.

There are multiple study designs, but when we talk about research in medicine, many people think about randomized clinical trials. This type of research can be a very powerful tool when it comes to understanding how X affects Y in a highly selected subset of the population. Drug testing is a perfect example of this. Not every child is eligible for the clinical trial, but the hope is that what we learn from this unique subset we’ll be able to extrapolate to everybody. Of course this is not always the case with clinical trials.

POGO’s database allows us to perform what is called population-based research. This type of study design looks at a population as a whole, in our case all children with cancer in Ontario, and examines what the experience is for everybody. It can help answer questions where outcomes are small and need to be studied on a large scale to understand the answers. Questions like:

Research Question Diagram from Case for Support

For me, population-based research is exciting because it can be just as transformative as biomedical research. The data we have collected in POGONIS, combined with the fact that we can link it to other datasets that are already being collected (Statistics Canada for example), can produce very rich and detailed information that would otherwise be too expensive and/or too labour intensive to collect. It is a very efficient way to utilize all the data that is out there and actually answer questions that can translate more immediately into improved care and better outcomes for the individuals we serve: patients, families and survivors of childhood cancer.

– Dr. Jason Pole

WATCH DR. POLE DESCRIBE HIS RESEARCH: The Power of Population-based Research 
READ MORE STORIES LIKE THIS ONE in the 2016 Community Impact Report

Dr. Jason Pole is Senior Scientist with the Pediatric Oncology Group of Ontario and is an Associate Professor in the Dalla Lana School of Public Health, University of Toronto and an Adjunct Scientist with The Hospital for Sick Children Research Institute and the Institute for Clinical Evaluative Sciences, Toronto. Dr. Pole has a background in epidemiology and health services research with an emphasis in the use of administrative data and complex survey instruments.

Posted in Misc | Tagged POGONIS database, population-based research, research

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