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The European Paediatric Rare Tumours Network ‐ European Registry (PARTNER) project for very rare tumors in children
Author(s) -
Orbach Daniel,
Ferrari Andrea,
Schneider Dominik T.,
Reguerre Yves,
Godzinski Jan,
Bien Ewa,
StachowiczStencel Teresa,
Surun Aurore,
Almaraz Ricardo Lopez,
Dragomir Monica,
Jani Dragana,
Ami Tal Ben,
Roganovic Jelena,
Brecht Ines B.,
Ladenstein Ruth,
Bisogno Gianni
Publication year - 2021
Publication title -
pediatric blood and cancer
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.116
H-Index - 105
eISSN - 1545-5017
pISSN - 1545-5009
DOI - 10.1002/pbc.29072
Subject(s) - medicine , pediatrics
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.