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Understanding differences in childhood cancer survival between countries (The BENCHISTA phase II project)
Professor. Kathy Pritchard-Jones
University College London, UCL Great Ormond Street Institute of Child Health; and Fondazione IRCCS, Istituto Nazionale dei Tumori, Milan
London, WC1N 1EH
1 February 2025
24 months
£298,772.51
The BENCHISTA phase 2 project aims to assess if there are differences between populations at key points in cancer diagnosis and treatment for children with six types of solid tumours.
We will build on our existing database of nearly 11,000 cases contributed by 67 cancer registries from 27 countries, using the routine healthcare data they collect as part of cancer registration. We are also inviting additional cancer registries to contribute data on their cases of the same six cancer types diagnosed in the same time period (2014-2017) as we studied in BENCHISTA phase 1, using the international consensus ‘Toronto’ guidelines to define tumour stage and some non-stage prognostic factors. All cancer registries are asked to provide follow-up out to five years from diagnosis.
We aim to understand why there are differences in survival for childhood cancers between some countries. Our previous project showed differences in how far a tumour had spread at diagnosis (‘tumour stage’) between different regions and countries. However, this only explains part of the reason behind geographical survival differences and is not the same for all tumour types. This means that improving early diagnosis is not the only solution to improving survival rates and reducing geographical variation.
By analysing data on types of treatments given, on indicators of tumour behaviour and if relapse or tumour progression has occurred, we aim to build a more complete picture of the reasons behind differences in survival rates between geographical regions within and outside Europe.
These findings should help to identify key areas for improvement for healthcare services and guide further research into improving survival rates, something very important to patients and families.
The project’s team involve clinical leads and experts in the field of paediatric oncology, epidemiology, public health and global health.
The project is co-led by a childhood cancer specialist (Professor Kathy Pritchard-Jones, based at University College London (UCL), UK and a cancer epidemiologist Laura Botta, based in the Department of Epidemiology and Data Science, Fondazione IRCCS Istituto Nazionale dei Tumori (INT), Milan, Italy. They bring extensive experience in working with hospital clinical data and cancer registry data used for research in a safe way that protects patient privacy.
The BENCHISTA core team has worked successfully together since 2021, with weekly on-line meetings between team members based at UCL, London (Kathy Pritchard-Jones & Angela Lopez) and INT, Milan (Laura Botta, Gemma Gatta, Fabio Didone). The wider project management approach is already well-established for phase I, with a monthly project management team involving the core team and four representatives from the contributing cancer registries. All CRs contributing data are members of the project working group (PWG), together with 6 expert clinicians in each of the tumour types being studied and with parent/survivor representation. The PWG has been meeting every 3 months for the last 3 years. The collaboration is very strong between all project team members. We also have an independent advisory board that meets 2-3 times a year.
The INT-based team members have a large amount of experience of complex statistical analysis and will train and supervise the biostatistician to be appointed there for this project. They are involved in the coordination of several large international projects that involve close collaboration between cancer registries and clinical and epidemiological researchers interested in cancer outcomes research. All team members will be involved in phase II, with Professor Gatta acting in an advisory role.
