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

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.

Clinical and epidemiological observations on individual radiation sensitivity and susceptibility

“…In addition, there are several cohorts on childhood cancer patients (e.g. Hawkins et al 2008;Rugbjerg et al 2014;Schwartz et al 2014;Asdahl et al 2015;Winther et al 2015;Teepen et al 2017;Grabow et al 2018). Their follow-up for subsequent neoplasms is a promising approach to study effects and effect modification in organs exposed to both high and low doses.…”

The PanCareSurFup consortium: research and guidelines to improve lives for survivors of childhood cancer

“…The Study Protocol established a common variable list for the PCSF dataset, described the process and security arrangements for data collection and transmission, outlined the cohort and case-control methods and lists of eligible conditions and their codes [8]. The Study Protocol was intended to ensure that all data providers followed the same procedures.…”

“…Ultimately each dataset was merged into the large PCSF single dataset required for all cohort studies. The datasets required for cohort studies were sent securely to Work Package Leaders for analysis [8]. For the case-control studies, the basic PCSF cohort file was transferred to partner University of Birmingham (UBHAM), where cases were identified and controls selected.…”

“…Collecting and harmonizing these data was the first task of PanCareSurFup; these methods are described by Grabow et al [8]. A second task ran in parallel, namely a survey of European cancer registries to determine the availability and quantity of data on long-term survivors.…”

Age related defects in NK cell immunity revealed by deep immune profiling of pediatric cancer patients

“…Current treatments are heavily reliant on chemotherapy and as such are associated with significant clinical challenges due to acute toxicity and often fail to achieve cure for patients with high risk, metastatic or relapsed disease 3 . In addition, survivors suffer multiple long-term treatment-related sequelae and excess mortality due to cardiotoxicity, secondary cancers and infections 4 . Improving cure rates, while decreasing side effects, requires new treatment strategies and harnessing the immune system is one possibility.…”