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. 2021 Apr 8;18(8):3918.
doi: 10.3390/ijerph18083918.

Managing a Pan-European Consortium on Late Effects among Long-Term Survivors of Childhood and Adolescent Cancer-The PanCareLIFE Project

Peter Kaatsch  1 , Julianne Byrne  2 , Desiree Grabow  3 ; PanCareLIFE Consortium
Collaborators, Affiliations

Managing a Pan-European Consortium on Late Effects among Long-Term Survivors of Childhood and Adolescent Cancer-The PanCareLIFE Project

Peter Kaatsch et al. Int J Environ Res Public Health. .

Abstract

PanCareLIFE brought together European partners and is the largest study to have evaluated the issues of fertility impairment, hearing loss, and health-related quality of life in survivors of childhood and adolescent cancer. Successful delivery of the project aims did not evolve solely from scientific qualities. Organizational structure and careful information management were key components for its successful completion and are retrospectively assessed in this paper. PanCareLIFE used cohort studies, case-control studies, clinical evaluation of hearing, and genetic testing to study 32,000 survivors from 25 data providers. A management team implemented the organizational structures, was the decision making body, developed and maintained a communication plan, and supervised deadlines, and made timely decisions. A biostatistics support group and an ethical advisory board were established. A publication committee ensured quality and accuracy of publications and is jointly responsible for the sustainability of the project. The chosen management structure of PanCareLIFE can serve as a blueprint for the management of complex international projects. Apart from the survivors themselves, various target audiences like oncology researchers, health care providers, and policy makers can derive benefits from the project. The results can also be used in oncological frontline therapy to reduce toxicity.

Keywords: cancer survivor; child; epidemiology; fertility; health care; health-related quality of life; hearing loss; late effects.

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Conflict of interest statement

The authors declare no conflict of interest.

Figures

Figure 1
Figure 1
Data flow within the PanCareLIFE project and the central role of the data center in work package 1.
Figure 2
Figure 2
Organizational structure chosen in the PanCareLIFE project (short names stand for beneficiaries briefly explained as follows (city and country) and described in detail in Appendix A under PanCareLIFE project partners): UMC-Mainz: Mainz, Germany; Boyne: Drogheda, Ireland; PT: Dublin, Ireland; AMC: Amsterdam, Netherlands; VUMC: Amsterdam, Netherlands; PMC: Utrecht, Netherlands; UzL: Lübeck, Germany; UKB: Bonn, Germany; UKM: Münster, Germany; CU: Berlin, Germany; UNIBE: Bern, Switzerland; IGG: Genoa, Italy; UHB: Brno, Czech Republic; CHU-SE: Saint Etienne, France; KB: Copenhagen, Denmark; FNM: Prague, Czech Republic.
Figure 3
Figure 3
The PanCare network and its EU funded projects PanCareSurFup, PanCareLIFE, and PanCareFollowUp.
See this image and copyright information in PMC

References

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