International Childhood Cancer Data Partnership

In 2020, nearly 280,000 children and adolescents aged 0-19 years were diagnosed with cancer worldwide, resulting in almost 110,000 fatalities. These figures could indeed be higher as the diagnosis of pediatric cancers is challenging in many countries. Leukemia stands out as the most prevalent type of cancer and a leading cause of cancer-related death in children.

Pediatric cancers, as a group, represent a host of heterogeneous rare diseases including ultra rare cancers with only a few cases diagnosed in each country annually. This heterogeneity and sample size limitation leads to a scarcity of data for each type of tumor pathology. This scarcity, in turn, considerably constrains the capacity of research efforts to elucidate the mechanisms underpinning these cancers and develop effective treatments.

In the light of these challenges, pooling and sharing various types of clinical and demographic data, as well as possibly tumor samples and images at different stages of the disease, constitutes a significant opportunity to bolster the research potential of institutions involved, both nationally and internationally.

It has become unequivocally clear that no single country possesses enough data on children to conduct the depth and breadth of research necessary to support research on these rare and ultra-rare tumors. The International Childhood Cancer Data Partnership initiative is designed to bridge this gap, bringing together countries with high-quality data and a readiness to share, in order to answer critical research questions.

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