UCL Great Ormond Street Institute of Child Health


Great Ormond Street Institute of Child Health


Project Groups & Collaborators

This section provides information about the working project groups and the structure that oversees the project's progress, activities, and any other relevant procedures.


Project Management Team

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 Calcer Registration and Analysis Service, London, England. 
  • Core Team (Prof Kathy Pritchard-Jones, Dr Gemma Gatta, Laura Botta, Fabio Didonè and Angela Lopez-Cortes)
Project Working Group

The Project Working Group (PWG) includes representatives from each contributing cancer registry, oncology leads from collaborating clinical study groups and representatives from communication and dissemination partners. This group convenes quarterly throughout the Project.   

Independent Advisory Board

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.
Patient and Public Involvement and Engagement in Research (PPIE)

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

Data Flow Diagram 

To overview a graphic representation of the data flow between cancer registries and the data controller, please follow this link: