ERN-PAEDCAN Partner: Paediatric Rare Tumours Network - European Registry
Project Coordinator: Azienda Ospedaliera di Padova, ITA
Univ.-Prof. Dr. Ruth Ladenstein (MD), MBA, cPM , Children´s Cancer Research Institute/Studies and Statistics for Integrated Research and Projects, AUT
Klinikum Dortmund GmbH, DEU
Eberhard Karls Universität Tübingen, DEU
Institut Curie, FRA
Gdanski Uniwersytet Medyczny, POL
National registries dedicated to collect epidemiological, clinical and treatment data of children and adolescents with very rare tumours (VRT) exist in four European countries: France, Germany (including Austrian patients), Italy and Poland. Aim of this project is the creation of a Paediatric rare tumour European Registry (PARTNER) linking the existing national registries. PARTNER will be also linked to a virtual consultation system, a dedicated website and the elaboration of diagnostic/
Strategic relevance: The value of this project is based on the European wide gathering of information on treatment of VRT and the provision of this information to experts generating new guidance recommendations for daily practice. The platform that will be created using innovative IT tools to link the existing databases will enhance European collaboration and facilitate cross border access to dedicated expertise.
Methods and means: The first step will be a process of harmonization of the national registries, (identification of the VRT of interest, selection of variables, use of common definitions and procedures for data management) and discussions of the regulatory issues relevant for the different countries. PARTNER will be then created and linked to the existing registries through the adoption of EUPID, a privacy-preserving, secure and versatile system for pseudonymised patient registration and record linkage. Standard of care recommendations will be also elaborated by a dedicated Working Group. LHEAR countries will be involved in the whole of process creating the basis for a larger EU registry and facilitating recommendations dissemination.
Expected outcome: This project will lead to the creation of a comprehensive EU platform that can be easily accessed by EU Health care providers and will ultimately result in improved patients’ care and reduction of the existing inequalities in cancer outcome across EU member states.
Funded under the 3rd Health Programme, call HP-PJ-06-2016 (Rare diseases – support for New Registries), by the European Commission
Duration: 01.01.2018 – 31.12.2020