The BENCHISTA project

International Benchmarking Of Stage At Diagnosis For Six Solid Childhood Solid Tumours (The BENCHISTA Project): A Population-Based, Retrospective Cohort Study 

Botta L, Didonè F, Lopez-Cortes A, Canete Nieto A, Desandes E, Hjalgrim LL, Jakab Z, Stiller CA, Zeller B, Gatta G, Pritchard-Jones K, on behalf of the BENCHISTA Project Working Group. International benchmarking of stage at diagnosis for six childhood solid tumours (the BENCHISTA project): a population-based, retrospective cohort study. The Lancet Child & Adolescent Health. 2025;9(2):89-99. DOI: https://doi.org/10.1016/S2352-4642(24)00302-X

Cancer data quality and harmonization in Europe: the experience of the BENCHISTA Project – international benchmarking of childhood cancer survival by stage

Lopez-Cortes A, Didonè F, Botta L, Hjalgrim LL, Jakab Z, Canete Nieto A, Stiller C, Zeller B, Gatta G, Pritchard-Jones K; BENCHISTA Project Working Group. Cancer data quality and harmonization in Europe: the experience of the BENCHISTA Project - international benchmarking of childhood cancer survival by stage. Front Oncol. 2023 Aug 22;13:1232451. doi: 10.3389/fonc.2023.1232451. PMID: 37675230; PMCID: PMC10477775. DOI: 10.3389/fonc.2023.1232451

International benchmarking of childhood cancer survival by stage at diagnosis: The BENCHISTA project protocol 

Botta L, Gatta G, Didonè F, Lopez Cortes A, Pritchard-Jones K; BENCHISTA Project Working Group. International benchmarking of childhood cancer survival by stage at diagnosis: The BENCHISTA project protocol. PLoS One. 2022 Nov 3;17(11):e0276997. doi: 10.1371/journal.pone.0276997. PMID: 36327231; PMCID: PMC9632762. DOI: 10.1371/journal.pone.0276997

Patient and public involvement to inform priorities and practice for research using existing healthcare data for children's and young people's cancers

Hughes NF, Fern LA, Polanco A, Carrigan C, Feltbower RG, Gamble A, Connearn E, Lopez A, Bisci E, Pritchard-Jones K. Patient and public involvement to inform priorities and practice for research using existing healthcare data for children's and young people's cancers. Res Involv Engagem. 2023 Aug 29;9(1):71. doi: 10.1186/s40900-023-00485-8. PMID: 37644582; PMCID: PMC10466824. DOI: 10.1186/s40900-023-00485-8

Setting international standards for patient and parent involvement and engagement in childhood, adolescent and young adult cancer research: A report from a European Collaborative Workshop

Polanco A, Al-Saadi R, Tugnait S, Scobie N, Pritchard-Jones K. Setting international standards for patient and parent involvement and engagement in childhood, adolescent and young adult cancer research: A report from a European Collaborative Workshop. Cancer Rep (Hoboken). 2022 Jun;5(6):e1523. doi: 10.1002/cnr2.1523. Epub 2021 Aug 12. PMID: 34383382; PMCID: PMC9199507. DOI: 10.1002/cnr2.1523

• Newsletter No.1 , March 2022
• Newsletter No.2 , July 2022
• Newsletter No.3 , December 2022
• Newsletter No.4 , April 2023
• Newsletter No.5 , March 2024
• Newsletter No.6 , November 2024
• Newsletter No.7 June 2025

• 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 

• Angela Lopez-Cortes (UCL)
• Holly Morgan (UCL)
• Douglas Burns (UCL)
• Fabio Didonè (INT)

The project management team (PMT) comprises the research leaders in the UK and Italy with a smaller number of nominated representatives from the Project Working Group. Integrated by:

• Adela Cañete Nieto, Paediatric Oncology and Hematology Unit, Hospital UiP La Fe, Valencia, Spain.
• Lisa Lyngsie Hjalgrim, Department of Pediatrics and Adolescent Medicine, University of Copenhagen, Rigshospitalet, Copenhagen, Denmark.
• Zsuzsanna Jakab, Department of Pediatrics, Semmelweis University, Budapest, Hungary.
• Bernward Zeller, Division of Pediatric and Adolescent Medicine, Oslo University Hospital, Oslo, Norway.
• Charles Stiller, National Cancer Registration and Analysis Service, London, England.
• Core Team (Prof Kathy Pritchard-Jones, Dr Gemma Gatta, Laura Botta, Fabio Didonè and Angela Lopez-Cortes)

• Phase 1 Participating Cancer Registries

An Independent Advisory Board (IAB) that includes a cancer registry director not directly involved in the day-to-day project, parent and survivor representatives, clinical executive-level members of a national paediatric oncology society, a clinical trial study group and a medical director-level clinician involved in the organisation of childhood cancer services. Integrated by:  

• Anna Gavin, Northern Ireland Cancer Registry School of Medicine, Centre for Public Health, Queen's University Belfast, Belfast, Northern Ireland.
• Piotr Czauderna, Department of Surgery and Pediatric Urology, Medical University of Gdansk, Poland.
• François Doz, SIREDO Center (Pediatric, Adolescent and Young Adults Oncology), Institut Curie, University of Paris, Paris, France.
• Riccardo Haupt, Epidemiology and Biostatistics Unit and DOPO Clinic, IRCCS Istituto Giannina Gaslini, Genova, Italy.
• Wendy Tarplee-Morris, The Little Princess Trust, Hereford, England.
• Christian Müller, Gert und Susanna Mayer Stiftung, Wuppertal, Nordrhein-Westfalen, Germany.
• Martin McCabe, Division of Cancer Sciences, University of Manchester, Manchester, England.
• Manola Bettio, European Commission, Joint Research Centre, Ispra, Varese, Italy.
• Core and Project Management Team.

There is also representation by Patient and Public Involvement and Engagement in Research (PPIE) structures.  

• Funders: Children with Cancer UK and the Associazione Italiana per la Ricerca sul Cancro, Italy.
• Sponsors: University College London (UCL), and the Fondazione IRCCS Istituto Nazionale dei Tumori, Milan, Italy.