Understanding why childhood cancer survival varies between countries (“BENCHISTA” - International Benchmarking of Childhood cancer Survival by Toronto Stage at diagnosis)

PI: Professor. Kathy Pritchard-Jones, University College London, UCL Great Ormond Street Institute of Child Health, London, UK; 

Co-PI: Gemma Gatta Unità di Epidemiologia valutativa, Fondazione IRCCS, Istituto Nazionale dei Tumori, Milan, Italy;

The BENCHISTA project is a global collaboration involving population-based cancer registries (CRs), primarily from Europe. The project's goal is to understand why survival figures for childhood cancer vary between countries by comparing the extent of cancer spread at diagnosis ("tumour stage") in six different solid tumours. The project tests whether differences in tumour stage frequencies explain survival variation between countries or regions. To achieve this, CRs use the international "Toronto" staging guidelines for paediatric tumours, supported by online training, a help desk, Toronto guidelines translation in different languages and quality assurance tests. 

Participating cancer registries gather necessary information to assign stages to cases of six solid tumours: Medulloblastoma (brain tumour); Osteosarcoma (bone tumour); Ewing sarcoma (bone tumour); rhabdomyosarcoma (soft tissue tumour); Wilms’ tumour (kidney tumour); Neuroblastoma (tumour of adrenal gland and other sites). 

In Phase 1, the project built a database of nearly 11,000 cases contributed by 73 cancer registries from 27 countries, using routine healthcare data collected during cancer registration. Phase 1 revealed differences in tumour stage at diagnosis between regions and countries. However, these differences only partially explain geographical survival variations and vary by tumour type. This indicates that improving early diagnosis alone is insufficient to enhance survival rates and reduce geographical disparities. 

In Phase 2, the project aims to expand collaboration by including new CRs and prolonging the follow up of cases up to five years after diagnosis. Additionally, Phase 2 seeks to understand survival differences for childhood cancers between countries by analyzing data on treatment types, tumour behavior indicators, and occurrences of relapse or tumour progression. This phase aims to build a comprehensive picture of the reasons behind survival rate differences across regions within and outside Europe. 

These findings will help identify key areas for healthcare service improvement and guide further research to enhance survival rates, which is crucial for patients and families. The project is supported by parents and patients association and clinicans to ensure transparency and strengthen efforts to improve childhood cancer care. 

Embedded in the BENCHISTA international project we also promote the national BENCHISTA-ITA project, funded by Italian association on cancer research (AIRC). The project aims to explain survival variations among children with cancer within Italy and between Italy and other European countries, with the ultimate goal of improving prognosis and reducing inequalities. The project has the same set of variables and cancers of the BENCHISTA project including in addition ependymoma, astrocytoma and retinoblastoma.   

Most Italian CRs participate in the project, despite challenges in accessing clinical records. The project aims to improve data exchange between RTs and clinical databases (modello 1.01 and Central Nervous system and Neuroblastoma clinical registries) enhancing information completeness through probabilistic linkage.  

The Italian project is supported by AIRTUM and AIEOP.