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. 2021 Jun:68 Suppl 4:e28993.
doi: 10.1002/pbc.28993.

Facing the challenges of very rare tumors of pediatric age: The European Cooperative Study Group for Pediatric Rare Tumors (EXPeRT) background, goals, and achievements

Andrea Ferrari  1 , Dominik T Schneider  2 , Gianni Bisogno  3 , Yves Reguerre  4 , Jan Godzinski  5   6 , Ewa Bien  7 , Teresa Stachowicz-Stencel  7 , Giovanni Cecchetto  8 , Bernadette Brennan  9 , Jelena Roganovic  10 , Tal Ben-Ami  11 , Calogero Virgone  8 , Nuno Reis Farinha  12 , Serena Mancini  3 , Daniel Orbach  13 , Ines B Brecht  14
Affiliations

Facing the challenges of very rare tumors of pediatric age: The European Cooperative Study Group for Pediatric Rare Tumors (EXPeRT) background, goals, and achievements

Andrea Ferrari et al. Pediatr Blood Cancer. 2021 Jun.

Abstract

It has become increasingly clear in recent years that we need to develop ad hoc strategies to combat very rare tumors (VRT) of pediatric age. In 2008, several schemes being run in different countries were pooled together to create the European Cooperative Study Group for Pediatric Rare Tumors (EXPeRT) project: a cooperative study group that aimed to promote research in the relatively uncharted territory of rare tumors of pediatric age. EXPeRT members were able to 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 2018 and 2021, the EXPeRT has been active in establishing the Pediatric Rare Tumors Network - European Registry (PARTNER). This project had 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). These clinical recommendations are the subject of a series of papers on Pediatric Blood and Cancer.

Keywords: EXPeRT; ExPO-r-Net; JARC; PARTNER; adolescents; children; international case registry; treatment recommendations; very rare tumors; virtual consultation system.

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References

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