Collecting better data for kids with cancer worldwide

Dr. Sumit Gupta is a Staff Oncologist and Clinician Investigator at SickKids.

In one of Terry Pratchett’s books, a character says, “if you don’t know where you are, then you don’t know where you’re going. And if you don’t know where you’re going, you’re probably going wrong.” Cancer registries collect information on how many and what kinds of cancer occur in a population. By doing so, they allow us to know where we are in terms of successful cancer control, and where we’re going.

Cancer stage is a key piece of information that cancer researchers and policymakers like myself require. Stage measures the extent of cancer when it is detected, which in turn determines the treatment and prognosis. When comparing cancer survival over time or between populations, you have to therefore know about the distribution of cancer stage in order to make the right conclusions.

This is particularly difficult in childhood cancer. There are dozens of different types of childhood cancer, most of which have their own staging system. Despite this, even when cancer registries do collect stage data for childhood cancer cases, they do so using a traditional adult staging system that is not actually applicable to kids. Cancer registries in their current form are therefore of limited use to childhood cancer research and policy.

To address this problem, we convened a meeting of experts in childhood cancer, epidemiology, and cancer registration from all over the world. Together, we decided what staging system registries should use for each of the major types of childhood cancer. We also decided how these systems could be adapted so that they were relevant to registries in developed countries like Canada, but also to developing countries around the world, where the majority of kids with cancer live. Our recommendations, called “The Toronto Consensus Principles and Guidelines”, were recently published in the Lancet Oncology.

We are now busy making sure that our recommendations are actually implemented by cancer registries worldwide. The TNM committee, which publishes the manual on cancer staging followed by registries, is for the first time going to include a paediatric section in their next edition, which will contain our recommendations. The Australian national paediatric cancer registry is currently conducting a pilot implementation of our recommendations to determine their feasibility. Other pilots are planned in Central America, India, and Europe. We’re essentially on our way to accomplishing our ultimate goal: collecting better data for kids with cancer worldwide.

Learn more about the Unit for Policy and Economics Research in Childhood Cancer.