The BENCHISTA Project

Professor Kathy Pritchard-Jones, University College London (UCL), London, UK
Dr Gemma Gatta (Co-PI phase 1), Fondazione IRCCS “Istituto Nazionale dei Tumori” (INT), Milan, Italy
Dr Laura Botta (Co-PI phase 2), Fondazione IRCCS “Istituto Nazionale dei Tumori” (INT), Milan, Italy

The project general aim is 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.

BENCHISTA focuses on: medulloblastoma, osteosarcoma, Ewing sarcoma, rhabdomyosarcoma, neuroblastoma, and Wilms Tumour. In the first phase of the project, more than 60 CRs collected information from these types of tumours, diagnosed between 2014-2017, and assigned the internationally recognised Toronto Stage Guidelines and other relevant data about the tumour prognosis and survival.

The CRs 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. All data are collected under strict principles of data security, confidentiality and data safety procedures.

The second phase of the BENCHISTA project aims to assess if there are differences between populations at key points in cancer diagnosis and treatment for children with the six solid tumour types selected in phase 1. We build on our existing database of nearly 11,000 cases. We are also inviting additional cancer registries to contribute data on their cases based on the same tumour types diagnosed in the same time period as we studied in the previous phase of BENCHISTA, using the Toronto Guidelines to define tumour stage (how far a tumour has spread) at diagnosis, improve data completeness and extend the follow-up period at least to five years from diagnosis.

With this information and subsequent analyses, we aim to have a wider overview of the reasons behind differences in survival rates between geographical areas within and outside Europe. Additionally, the findings could help identify areas for improvement in healthcare services, guide further research into improving survival rates and improve outcomes for children and teenagers with cancer.

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.