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. 2021 Jun:68 Suppl 4:e29072.
doi: 10.1002/pbc.29072. Epub 2021 Apr 29.

The European Paediatric Rare Tumours Network - European Registry (PARTNER) project for very rare tumors in children

Daniel Orbach  1 , Andrea Ferrari  2 , Dominik T Schneider  3 , Yves Reguerre  4 , Jan Godzinski  5 , Ewa Bien  6 , Teresa Stachowicz-Stencel  6 , Aurore Surun  7 , Ricardo Lopez Almaraz  8 , Monica Dragomir  9 , Dragana Jani  10 , Tal Ben Ami  11 , Jelena Roganovic  12 , Ines B Brecht  13 , Ruth Ladenstein  14 , Gianni Bisogno  15
Affiliations

The European Paediatric Rare Tumours Network - European Registry (PARTNER) project for very rare tumors in children

Daniel Orbach et al. Pediatr Blood Cancer. 2021 Jun.

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.

Keywords: EXPeRT; ExPO-r-Net; PARTNER; adolescents; children; therapeutic recommendations; very rare tumors.

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References

REFERENCES

    1. Ferrari A, Brecht IB, Gatta G, et al. Defining and listing very rare cancers of paediatric age: consensus of the Joint Action on Rare Cancers in cooperation with the European Cooperative Study Group for Pediatric Rare Tumors. Eur J Cancer. 2019;110:120-126.
    1. Ferrari A, Schneider DT, Bisogno G. The founding of the European Cooperative Study Group on Pediatric Rare Tumors - EXPeRT. Expert Rev Anticancer Ther. 2013;13(1):1-3.
    1. Bisogno G, Ferrari A, Bien E, et al. Rare cancers in children - the EXPeRT initiative: a report from the European Cooperative Study Group on Pediatric Rare Tumors. Klin Padiatr. 2012;224(6):416-420.
    1. Brecht IB, Bremensdorfer C, Schneider DT, et al. Rare malignant pediatric tumors registered in the German Childhood Cancer Registry 2001-2010. Pediatr Blood Cancer. 2014;61(7):1202-1209.
    1. Stachowicz-Stencel T, Orbach D, Brecht I, et al. Thymoma and thymic carcinoma in children and adolescents: a report from the European Cooperative Study Group for Pediatric Rare Tumors (EXPeRT). Eur J Cancer. 2015;51(16):2444-2452.

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