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

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, Mike M Hawkins, Zsuzsanna Jakab, Leontien C M Kremer, Claudia E Kuehni, Rahel Kuonen, Päivi Maria Lähteenmäki, Raoul C 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, 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, Mike M Hawkins, Zsuzsanna Jakab, Leontien C M Kremer, Claudia E Kuehni, Rahel Kuonen, Päivi Maria Lähteenmäki, Raoul C 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

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.

Keywords: 5-Year survivors; Childhood and adolescent cancer; Epidemiology; European Cohort; Follow-up; Late effects.

Conflict of interest statement

Conflict of interest

The authors declare that they have no conflict of interest.

Ethical approval

All procedures performed in studies involving human participants were in accordance with the national ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

Figures

Fig. 1
Fig. 1
Data flow between data provider, central work package WP1 (with its PanCareSurFup study database) and three outcome-related work packages 3–5 (1: DPs delivered data; 2: WP1 checked technical quality; 3: WP1 ran plausibility checks; 4: queries to DPs to clarify implausibility; 5: DPs sent corrected data set; 6: WP1 prepared WP-specific cohorts; 7: WP1 makes WP-specific cohorts available; 8: WP sent queries to WP1)
Fig. 2
Fig. 2
Number of cases in the PanCareSurFup 5-year survivor cohort by year of diagnosis and by data provider (based on 83,333 individuals as specified in Table 3)

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