The PanCareSurFup cohort of 83,333 five-year survivors of childhood cancer: a cohort from 12 European countries

Research output: Contribution to journalArticle

Authors

  • Desiree Grabow
  • Melanie Kaiser
  • Lars Hjorth
  • Julianne Byrne
  • Daniela Alessi
  • Rodrigue S Allodji
  • Francesca Bagnasco
  • Edit Bárdi
  • Andrea Bautz
  • Chloe J Bright
  • Florent de Vathaire
  • Elizabeth A M Feijen
  • Stanislaw Garwicz
  • Oskar Hagberg
  • Riccardo Haupt
  • Michael Hawkins
  • Zsuzsanna Jakab
  • Leontien C M Kremer
  • Claudia E Kuehni
  • Rahel Kuonen
  • Päivi Maria Lähteenmäki
  • Raoul Reulen
  • Cécile M Ronckers
  • Carlotta Sacerdote
  • Giao Vu-Bezin
  • Finn Wesenberg
  • Thomas Wiebe
  • David L Winter
  • Jeanette Falck Winther
  • Lorna Zadravec Zaletel
  • Peter Kaatsch
  • PanCareSurFup Consortium

Colleges, School and Institutes

External organisations

  • German Childhood Cancer Registry (GCCR), Institute for Medical Biostatistics, Epidemiology and Informatics (IMBEI), University Medical Center, Johannes Gutenberg University Mainz, Mainz, Germany. desiree.grabow@unimedizin-mainz.de.
  • German Childhood Cancer Registry (GCCR), Institute for Medical Biostatistics, Epidemiology and Informatics (IMBEI), University Medical Center, Johannes Gutenberg University Mainz, Mainz, Germany.
  • Department of Clinical Sciences, Skane University Hospital, Lund University, Pediatrics, Lund, Sweden.
  • Boyne Research Institute, 5 Bolton Square, East, Drogheda, Co. Louth, A92 RY6K, Ireland.
  • Childhood Cancer Registry of Piedmont, Cancer Epidemiology Unit, Citta' della Salute e della Scienza Hospital-University of Turin and Center for Cancer Prevention (CPO), Via Santena 7, 10126, Turin, Italy.
  • Cancer and Radiation, Unit 1018 INSERM, University Paris-Saclay, Gustave Roussy, 39, rue Camille Desmoulins, 94805, Villejuif Cedex, France.
  • Epidemiology and Biostatistics Unit, Gaslini Children's Hospital, Via Gerolamo Gaslini, 5, 16148, Genova, Italy.
  • Kepler Universitätsklinikum, Linz, Austria.
  • Danish Cancer Society Research Center, Strandboulevarden 49, 2100, Copenhagen, Denmark.
  • Centre for Childhood Cancer Survivor Studies, Institute of Applied Health Research, University of Birmingham, Birmingham, B15 2TT, UK.
  • Department of Pediatric Oncology, Emma Children's Hospital/Academic Medical Center Amsterdam, Meibergdreef 9, 1105 AZ, Amsterdam, The Netherlands.
  • Regional Cancer Centre South, Lund, Sweden.
  • Hungarian Childhood Cancer Registry, 2nd Department of Pediatrics, Semmelweis University, Budapest, Hungary.
  • Princess Maxima Centre for Paediatric Oncology, Utrecht, The Netherlands.
  • Department of Paediatrics, University Children's Hospital of Bern, University of Bern, Bern, Switzerland.
  • Swiss Childhood Cancer Registry, Institute of Social and Preventive Medicine, University of Bern, Bern, Switzerland.
  • Department of Pediatric and Adolescent Medicine, Turku University and Turku University Hospital, Turku, Finland.
  • Norwegian Cancer Register Department of Pediatric Medicine, Faculty of Medicine, Oslo University Hospital and Institute of Clinical Medicine, University of Oslo, Oslo, Norway.
  • Division of Radiotherapy, Institute of Oncology, Zaloška cesta 2, 1000, Ljubljana, Slovenia.

Abstract

Childhood cancer survivors face risks from a variety of late effects, including cardiac events, second cancers, and late mortality. The aim of the pan-European PanCare Childhood and Adolescent Cancer Survivor Care and Follow-Up Studies (PanCareSurFup) Consortium was to collect data on incidence and risk factors for these late effects among childhood cancer survivors in Europe. This paper describes the methodology of the data collection for the overall PanCareSurFup cohort and the outcome-related cohorts. In PanCareSurFup 13 data providers from 12 countries delivered data to the data centre in Mainz. Data providers used a single variable list that covered all three outcomes. After validity and plausibility checks data was provided to the outcome-specific working groups. In total, we collected data on 115,596 patients diagnosed with cancer from 1940 to 2011, of whom 83,333 had survived 5 years or more. Due to the eligibility criteria and other requirements different numbers of survivors were eligible for the analysis of each of the outcomes. Thus, 1014 patients with at least one cardiac event were identified from a cohort of 39,152 5-year survivors; for second cancers 3995 survivors developed at least one second cancer from a cohort of 71,494 individuals, and from the late mortality cohort of 79,441 who had survived at least 5 years, 9247 died subsequently. Through the close cooperation of many European countries and the establishment of one central data collection and harmonising centre, the project succeeded in generating the largest cohort of children with cancer to date.

Details

Original languageEnglish
JournalEuropean Journal of Epidemiology
Early online date2 Mar 2018
Publication statusE-pub ahead of print - 2 Mar 2018

Keywords

  • Journal Article