“If you work on frequent cancers, do randomized trials! If you work on rare cancers – FIND FRIENDS!”.
This is exactly the spirit that led to the foundation of the European Cooperative Study Group for Pediatric Rare Tumors – EXPeRT in June 2008, which is officially supported by the International Society of Peadiatric Oncology – Europe (SIOP Europe).
Children with very rare tumors have not benefited to the same extent from the enormous advances made in pediatric oncology. Indeed, it has become increasingly clear in recent years that there is a need to develop ad hoc strategies to fight Very Rare Tumors (VRT) of pediatric age. This is why several national groups specifically focusing on rare cancers in childhood have been founded in Italy, France, the UK, Poland, and Germany in the new millennium and joined forces in EXPeRT. These initiatives have contributed to increase awareness and improve knowledge, treatment, and outcome of rare pediatric tumors.
EXPeRT members can activate different levels of cooperation to achieve their goals, and to obtain dedicated funding by participating in EU-financed projects. Their experiences emphasize the merits of networking, seeking new partnerships, joining forces, and pooling resources to extend the reach of research efforts, and ultimately improve the quality of patient care.
Between 2014-2017, EXPeRT enhanced the knowledge on very rare pediatric tumors by exchanging data and performing analyses to develop evidence-based and internationally recognized guidelines and to enforce EXPeRT consultation thanks to the involvement in the European project called Expo-r-Net. This project was uniquely positioned to address healthcare inequalities for children and teenagers with cancer across Europe and develop innovative modalities for a better treatment, care, and expertise-sharing.
Since 2018, the EXPeRT members are active in establishing of the second European project called Pediatric Rare Tumors Network – European Registry (PARTNER). This project has the main purposes of building a European common registry of pediatric VRT, but also the major task of developing diagnostic and treatment guidelines for VRT (or at least part of them).