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Paediatric Very Rare Tumours Registration and Management in European Countries with Low Health Expenditure Average Rates

Overview
Journal Clin Transl Oncol
Specialty Oncology
Date 2024 Sep 3
PMID 39225960
Authors
Jelena Roganovic
Calogero Virgone
Tal Ben-Ami
Yves Reguerre
Andrea Ferrari
Daniel Orbach
Jan Godzinski
Gianni Bisogno
Nuno Jorge Farinha
Malgorzata Krawczyk
Dominik T Schneider
Ines B Brecht
Ewa Bien
Affiliations
Soon will be listed here.
Abstract

Purpose: Within the Paediatric Rare Tumours Network-European Registry (PARTNER) project, we aimed to evaluate the situation on the registration and management of paediatric patients affected by very rare tumours (VRT) in the European low health expenditure average rates (LHEAR) countries.

Methods: A survey regarding infrastructure, organisation, and clinical decision-making information on VRT was designed. This survey was distributed to the representatives of LHEAR countries involved in the activities of the PARTNER Work Package 7.

Results: Eighteen answers from 17 countries were collected regarding the national organisation, methods of registration of VRT cases, the availability of medical experts in VRT, the access to updated diagnostic and therapeutic procedures (such as proton therapy, immunotherapy and, targeted therapies), and research on paediatric VRT. A high variability in the registration and management of patients with VRT has been observed with additional wide inequalities in pathology review, uniformity of clinical decisions, availability of selected procedures, and diagnostic and research tools.

Conclusion: In the majority of LHEAR countries, no clinical or research structures have been implemented for children and adolescents with VRT. Therefore, VRT still have an orphan status in these countries. These significant differences on the technology access and use between European regions need to be addressed.

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