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

Peter Kaatsch, Julianne Byrne, Desiree Grabow and on behalf of the PanCareLIFE Consortium
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Peter Kaatsch: German Childhood Cancer Registry (GCCR), Institute of Medical Biostatistics, Epidemiology and Informatics, University Medical Center, 55131 Mainz, Germany
Julianne Byrne: Boyne Research Institute, 5 Bolton Square, East, Drogheda, A92 RY6K Co. Louth, Ireland
Desiree Grabow: German Childhood Cancer Registry, Division of Childhood Cancer Epidemiology, Institute of Medical Biostatistics, Epidemiology and Informatics (IMBEI), Johannes-Gutenberg University, 55131 Mainz, Germany
on behalf of the PanCareLIFE Consortium: The consortium members are listed in Appendix A .

IJERPH, 2021, vol. 18, issue 8, 1-13

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: late effects; child; cancer survivor; health care; epidemiology; fertility; hearing loss; health-related quality of life (search for similar items in EconPapers)
JEL-codes: I I1 I3 Q Q5 (search for similar items in EconPapers)
Date: 2021
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