According to the estimates for 2020, recently released by the International Agency for Research on Cancer (IARC) in the Global Cancer Observatory (https://gco.iarc.fr/today/home), 280 000 new cancer cases occurred in the global population of children and adolescents (ages 0–19 years). As before, the leading cancer types in this age group were haematological malignancies (43% of the estimated total) and brain tumours (11% of the total). These global estimates indicate that cancer caused 108 000 deaths before age 20 years. A summary of these estimates is available here: https://infogram.com/15-feb-international-childhood-cancer-day-1h1749vwqg1xl6z?live
Although the cancer burden is well described in high-income countries, there is a dearth of relevant data in countries with limited resources. This is because these countries do not invest sufficiently in health information systems, and therefore registration and reporting of vital statistics and cancer occurrence are poor or non-existent.
Population-based cancer registries provide a mechanism that generates information on the cancer burden in the populations they cover. By means of internationally standardized techniques, data on cancer incidence and outcome can be used to identify gaps and evaluate progress. The goal of the World Health Organization (WHO) Global Initiative for Childhood Cancer is to improve survival of children with cancer and to ensure that on a global scale survival rates will increase to at least 60% by 2030. Cancer registries provide the data for this success.
We have developed a whole programme of actions, which all focus on registration of cancer in children. Working in coordination with St. Jude, IARC will (i) help to implement best practices in countries, taking into account the local context; (ii) create an educational framework to address the learning needs of personnel of cancer registries; and (iii) conduct research studies. There are multiple initial research interests. We will analyse the existing registration practices and the classification of childhood tumours of the central nervous system. We will identify the barriers and propose solutions for international data sharing. We will also report on the financial toxicity of childhood cancer in the affected families.
In partnership with St. Jude Children’s Research Hospital, IARC has selected four pilot countries, which have demonstrated an interest in the development of childhood cancer registration on a population level. In each country, we will identify stakeholders, and together we will study the current situation, discuss the needs, identify available resources, and establish a plan for development and follow-up. We have started to work with Mexico, and discussions are under way with representatives of three other countries.