We know that for both children and adults, cancer outcomes on clinical trials are not the same as real world outcomes. Population-based cancer registries allow us to compare outcomes between jurisdictions, sub populations, and over time. This allows us to identify populations whose outcomes are lagging behind and identify targets for interventions. These comparisons however are hampered by the fact that registries rarely collect important prognosticators such as stage, or if so do so in a way that is not relevant to children with cancer. Without these prognosticators, true comparisons between populations are difficult and trends harder to identify.
Recent efforts have brought together registry and childhood cancer experts from around the world to endorse staging systems by which childhood cancer stage should be collected by registries (see attached). These recommendations have been endorsed by multiple international agencies (TNM, International Association for Cancer Registries) and implemented in several Australian, European, and Asian jurisdictions but have not yet been implemented in any North American jurisdictions. A similar process is currently underway to achieve consensus on what non-stage prognosticators (e.g. cytogenetics, response to treatment) should also be collected by registries.
If registries in North American jurisdictions were supported to collect childhood cancer stage and other prognosticators in a uniform way, that would represent an unprecedented and globally unique resource that would allow researchers, policymakers, and advocated to carefully and confidently track trends in outcome among children, adolescents, and young adults, identify disparities, and target the most important outcome gaps.