Paediatric very rare tumours registration and management in European countries with low health expenditure average rates.

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

SUBMITTER: Roganovic J 

PROVIDER: S-EPMC12000181 | biostudies-literature | 2025 Apr

REPOSITORIES: biostudies-literature