The BENCHISTA Project

The International Benchmarking of Childhood Cancer Survival by Stage Project also called BENCHISTA, is a research collaboration between multiple population-based cancer registries (PBCRs) within and outside Europe. The project is designed to understand the reasons of variation in childhood cancer survival rates between countries and to highlight any areas that require improvement.

Principal investigators: Professor Kathy Pritchard-Jones
University College London (UCL)
London, UK
Dr Gemma Gatta
Fondazione IRCCS “Istituto Nazionale dei Tumori” (INT)
Milan, Italy

Summary

The project aims to improve understanding of the reasons for variation in childhood cancer survival between countries and to highlight areas that need to be targeted for improvement. Also, to encourage the application of the Toronto Staging Guidelines (TG) by a large number of European and non-European cancer registries (CRs) for the most common solid paediatric cancers.

The project focuses on: medulloblastoma, osteosarcoma, Ewing sarcoma, rhabdomyosarcoma, neuroblastoma, and Wilms Tumour. More than 60 CRs will collect information from these types of tumours, diagnosed between 2014-2017, will assign the Toronto Stage at diagnosis and collect other relevant data about the tumour prognosis and survival.

All data will be collected under strict principles of data security, confidentiality and data safety procedures. The CRs will provide the data directly to the data controller who will oversee and store the information in line with General Data Protection Regulations (GDPR) and pertinent laws to ensure data is protected.

Collaboration Channels

Several working groups currently support the assessment of procedures, policies and information related to the study, these include the Project Management Team and Project Working group.

The Project also includes parent and public involvement and engagement in research (PPIE) as part of its structure and has support from several key organisations including CCLG, SIOP, SIOP Europe, AIEOP, wider PPIE groups in Europe, other key stakeholders (HDR-UK, DATA-CAN, CCI-Europe) and charity/external care organisations.

An Independent Advisory Board regularly communicates updates about the project progress and outputs to influential leaders in topics such as childhood cancer, cancer data registration, health policy, among others.