The Role of Registries and Tumor Banking in Rare Pediatric Tumors

Abstract

Rare pediatric tumors are a heterogenous group of tumors that are rare at any age, or rare in children and common in adults. These are orphan diseases which have not benefitted from the significant advances seen in other pediatric malignancies. To improve our understanding of these tumors, rare tumor registries and tissue repositories have been established. The development of registries has followed two different models: in Europe, the focus has been on large co-operative group registries that enroll the breath of rare tumors, while in the USA, individual rare tumor registries have predominated. Both types of registries have significantly improved our understanding of these tumors. The co-operative group registries have provided valuable information on some very rare tumors, leading to the development of therapeutic guidelines, with the goal of standardizing treatment. On the other hand, the individual rare tumor registries have focused on single tumors, providing granular clinical and molecular information. They have defined the molecular pathogenesis of these tumors and provided new models to understanding carcinogenesis. We discuss the important contributions made by these registries.