Exploring the Statistics Behind Neuroblastoma in the UK The National Cancer Registration and Analysis Service (NCRAS), work as part of Public Health England to collect data on all cases of cancer occurring in people living in England, to support public health, healthcare and research. As part of this, they release regular reports specific to cancer in children, teenagers and young adults. The 2021 report is now available and brings the opportunity to look deeper into the government statistics regarding neuroblastoma and how they affect those working within the field. What is included in the report? The 2021 Children, Teenagers and Young Adults Cancer Statistics Report holds a summary of all UK cancer cases in children and young adults aged 0-24 across the 20-year period of 1997-2016. Within this, incidence rates and survival rates are broken down into different cancer types and age categories. The information on neuroblastoma survival within the report, which is summarised here, is only in relation to children aged 0-14 at diagnosis as the occurrence in young adults above this age is so low. How often does neuroblastoma occur? During the 20-year period of 1997-2016, around 33,000 children and teenagers aged 0-14 were diagnosed with cancer, on average 1645 per year. Cases of neuroblastoma accounted for 6% of these, with an average of 99 children diagnosed each year. What are the survival rates for neuroblastoma? According to the report, the 5-year survival rate for neuroblastoma across the whole 20-year period was 66%. Comparatively, the 5-year survival rate for all childhood cancers was 81%. It should be noted that whilst the 5-year survival rate is a useful tool to look for progress and improvement, it should not be used to represent the proportion of children being cured. The advancement in therapy for neuroblastoma does mean more children become free of disease, but there are also more children living with their disease for longer including post-relapse and remaining on treatment for many years. As a result, these statistics are not wholly representative of long-term, disease free survival. How have they changed during that time? The report has also divided the data into 5-year periods which allows us to see how the survival rate for neuroblastoma has changed over this time. Period 1997-2001 2002-2006 2007-2011 2012-2016 5-Year Survival 60.4% 63.6% 68.3% 69.8% What do these statistics tell us? Looking at the occurrence rates of neuroblastoma within the context of all childhood cancers can help to understand the challenges in fighting against the disease. Its rarity in relation to other conditions can be a barrier towards improving the landscape which we must overcome. The change in survival rate that has been recorded over this 20-year period shows us that it is improving. This is a direct result of the expanding treatment options that have come from clinical research over the years, including anti-GD2 monoclonal antibody therapy that Solving Kids’ Cancer was instrumental in obtaining approval for. Seeing this is hopeful, and emphasises how important it is to push research forward to make sure that this progress continues and accelerates. Behind these increasing statistics are more children who are surviving longer. We must continue to act both for those who are not, and for the many children whose survival comes at the cost of significant lifelong health problems caused by highly toxic therapies. What can’t they tell us? Whilst this kind of data about neuroblastoma is useful and is certainly very helpful to monitor the progress of the field, there are obvious limitations from only thinking about the disease in this way. Looking at the occurrence of neuroblastoma relative to all childhood cancers it appears rare, but this can be a huge challenge in fighting for more funding and research into the disease and does not bring comfort to families who are affected by it. This is something that we are very aware of at Solving Kids’ Cancer and aim to address in our calls for action. The other issue to highlight is the nature of the survival rates reported and how they can be misleading. A 69% 5-year survival rate for neuroblastoma does not show the huge variation between survival in different sub-types of the disease. It is important to recognise that this figure includes low, intermediate, and high-risk cases where the 5-year survival can range from over 95% to as poor as 40% respectively. Currently insufficient information is captured at the time of diagnosis in the UK’s reporting systems to enable more insightful analysis to be performed, for example to be able to track survival for children diagnosed with high-risk neuroblastoma over time. The report does seek to hint at disparities in survival between different groups of patients by breaking the data down into survival rates for children diagnosed before the age of 1, at 90%, and those diagnosed aged 1-14, at 61% for the period 2012-2016. This difference arises as there is a greater proportion of low-risk cases in children under 1, whereas slightly older children are more likely to have intermediate or high-risk disease. Having an awareness of the full extent of variation between cases and the resulting prognosis for each child is crucial to ensure enough work is being done for those children with the poorest outcomes.