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

Grabow, Desiree; Kaiser, Melanie; Hjorth, Lars LU ; Byrne, Julianne; Alessi, Daniela; Allodji, Rodrigue S.; Bagnasco, Francesca; Bárdi, Edit; Bautz, Andrea and Bright, Chloe J., et al. (2018) In European Journal of Epidemiology 33(3). p.335-349
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... (More)

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.

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keywords
5-Year survivors, Childhood and adolescent cancer, Epidemiology, European Cohort, Follow-up, Late effects
in
European Journal of Epidemiology
volume
33
issue
3
pages
15 pages
publisher
Springer
external identifiers
  • scopus:85045049088
ISSN
0393-2990
DOI
10.1007/s10654-018-0370-3
language
English
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yes
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1fe02cbc-a350-41b8-b196-44d3430d5f09
date added to LUP
2018-04-20 14:45:49
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2019-05-21 04:04:15
@article{1fe02cbc-a350-41b8-b196-44d3430d5f09,
  abstract     = {<p>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.</p>},
  author       = {Grabow, Desiree and Kaiser, Melanie and Hjorth, Lars and Byrne, Julianne and Alessi, Daniela and Allodji, Rodrigue S. and Bagnasco, Francesca and Bárdi, Edit and Bautz, Andrea and Bright, Chloe J. and de Vathaire, Florent and Feijen, Elizabeth A.M. and Garwicz, Stanislaw and Hagberg, Oskar and Haupt, Riccardo and Hawkins, Mike M. and Jakab, Zsuzsanna and Kremer, Leontien C.M. and Kuehni, Claudia E. and Kuonen, Rahel and Lähteenmäki, Päivi Maria and Reulen, Raoul C. and Ronckers, Cécile M. and Sacerdote, Carlotta and Vu-Bezin, Giao and Wesenberg, Finn and Wiebe, Thomas and Winter, David L. and Winther, Jeanette Falck and Zaletel, Lorna Zadravec and Kaatsch, Peter},
  issn         = {0393-2990},
  keyword      = {5-Year survivors,Childhood and adolescent cancer,Epidemiology,European Cohort,Follow-up,Late effects},
  language     = {eng},
  month        = {03},
  number       = {3},
  pages        = {335--349},
  publisher    = {Springer},
  series       = {European Journal of Epidemiology},
  title        = {The PanCareSurFup cohort of 83,333 five-year survivors of childhood cancer : a cohort from 12 European countries},
  url          = {http://dx.doi.org/10.1007/s10654-018-0370-3},
  volume       = {33},
  year         = {2018},
}