The European Paediatric Rare Tumours Network ‐ European Registry (PARTNER) project for very rare tumors in children
Daniel Orbach, Andrea Ferrari, Dominik T. Schneider, Yves Réguerre, Jan Godziński, Ewa Bień, Teresa Stachowicz‐Stencel, Aurore Surun, Ricardo López Almaraz, Monica Dragomir, Dragana Jani, Tal Ben Ami, Jelena Roganović, Ines B. Brecht, Ruth Ladenstein, Gianni Bisogno
Abstract
The PARTNER project (Paediatric Rare Tumours Network - European Registry) was launched in 2016. PARTNER aims to create a European Registry dedicated to children and adolescents with very rare tumors (VRT). It links existing national registries and provides a registry for those countries in which a VRT registry has not yet been created. This consortium is composed of the various national cooperative groups and their respective member institutions. The strategic value of this project is based on the Europe-wide data collection concerning the treatment of VRTs. These data are provided to experts and constitute the basis for new clinical practice guidelines for use by ERN (European Reference Network) and non-ERN institutions. The proposed tasks and milestones will increase collaboration in the field of pediatric oncology among member states and will also facilitate the inclusion of low health expenditure average rate (LHEAR) countries in this process. In addition, this project creates a platform for VRTs that may represent a model on how to elaborate a comprehensive approach (case registration, international case consultation and treatment recommendations, and website to provide information for parents/patients) for rare diseases.