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

Grabow, Desiree; Kaiser, Melanie; Hjorth, Lars; Byrne, Julianne; Alessi, Daniela; Allodji, Rodrigue S; Bagnasco, Francesca; Bárdi, Edit; Bautz, Andrea; Bright, Chloe J; de Vathaire, Florent; Feijen, Elizabeth A M; Garwicz, Stanislaw; Hagberg, Oskar; Haupt, Riccardo; Hawkins, Mike M; Jakab, Zsuzsanna; Kremer, Leontien C M; Kuehni, Claudia E; Kuonen, Rahel; ... (2018). The PanCareSurFup cohort of 83,333 five-year survivors of childhood cancer: a cohort from 12 European countries. European journal of epidemiology, 33(3), pp. 335-349. Springer 10.1007/s10654-018-0370-3

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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.

Item Type:

Journal Article (Original Article)

Division/Institute:

04 Faculty of Medicine > Pre-clinic Human Medicine > Institute of Social and Preventive Medicine
04 Faculty of Medicine > Department of Gynaecology, Paediatrics and Endocrinology (DFKE) > Clinic of Paediatric Medicine

UniBE Contributor:

Kühni, Claudia and Kuonen, Rahel

Subjects:

600 Technology > 610 Medicine & health
300 Social sciences, sociology & anthropology > 360 Social problems & social services

ISSN:

0393-2990

Publisher:

Springer

Language:

English

Submitter:

Doris Kopp Heim

Date Deposited:

13 Mar 2018 12:24

Last Modified:

23 Oct 2019 12:24

Publisher DOI:

10.1007/s10654-018-0370-3

PubMed ID:

29497894

Uncontrolled Keywords:

5-Year survivors Childhood and adolescent cancer Epidemiology European Cohort Follow-up Late effects

BORIS DOI:

10.7892/boris.112891

URI:

https://boris.unibe.ch/id/eprint/112891

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