PanCareLIFE: The scientific basis for a European project to improve long-term care regarding fertility, ototoxicity and health-related quality of life after cancer occurring among children and adolescents

Julianne Byrne, Desiree Grabow, Helen Campbell, Kylie O'Brien, Stefan Bielack, Antoinette am Zehnhoff-Dinnesen, Gabriele Calaminus, Leontien Kremer, Thorsten Langer, Marry M. van den Heuvel-Eibrink, Eline van Dulmen-den Broeder, Katja Baust, Andrea Bautz, Jörn D. Beck, Claire Berger, Harald Binder, Anja Borgmann-Staudt, Linda Broer, Holger Cario, Leonie CasagrandaEva Clemens, Dirk Deuster, Andrica de Vries, Uta Dirksen, Jeanette Falck Winther, Sophie Fosså, Anna Font-Gonzalez, Victoria Grandage, Riccardo Haupt, Stefanie Hecker-Nolting, Lars Hjorth, Melanie Kaiser, Line Kenborg, Tomas Kepak, Kateřina Kepáková, Lisbeth E. Knudsen, Maryna Krawczuk-Rybak, Jarmila Kruseova, Claudia E. Kuehni, Marina Kunstreich, Rahel Kuonen, Herwig Lackner, Alison Leiper, Erik A.H. Loeffen, Ales Luks, Dalit Modan-Moses, Renee Mulder, Ross Parfitt, Norbert W. Paul, Andreas Ranft, Ellen Ruud, Ralph Schilling, Claudia Spix, Joanna Stefanowicz, Gabriele Strauβ, Andre G. Uitterlinden, Marleen van den Berg, Anne Lotte van der Kooi, Marloes van Dijk, Flora van Leeuwen, Oliver Zolk, Daniela Zöller, Peter Kaatsch, C. Clissmann, M. L. Garré, J. F. Winther, G. Strauss, A. Panasiuk, D. Modan

Research output: Contribution to journalArticlepeer-review

39 Citations (Scopus)


Aims: Survival after cancer diagnosed during childhood or adolescence continues to improve with new treatments and supportive therapies. Optimal long-term care requires that risks to vulnerable organs are clearly defined and translated into guidelines that are implemented into practice. PanCareLIFE is a pan-European consortium that addresses survivorship issues comprising fertility, hearing impairment and quality of life. This article describes the scientific basis of PanCareLIFE's studies. Methods: PanCareLIFE involves 17 partner institutions from eight European countries, with additional 11 data providers from five other countries. Study designs and methods include molecular genetic, cohort and case-control studies, a longitudinal study and an intervention study. Ethics and data protection issues have been taken into account from the beginning. Results: PanCareLIFE will investigate the way that treatment impairs female fertility, by evaluating anti-Müllerian hormone levels and the underlying genetic susceptibility to loss of fertility. For our fertility studies, more than 6000 survivors have completed questionnaires, more than 1500 provided serum samples and more than 400 case-control triads have been identified. Fertility preservation guidelines for boys and girls will be developed. More than 2000 survivors have contributed audiograms for the ototoxicity study. Almost 1000 samples were sent for genetic analysis related to ototoxicity and gonadal reserve. The SF-36 questionnaire will measure quality of life in more than 10,000 survivors. Conclusions: The large number of subjects enrolled in PanCareLIFE and the detailed information accumulated will allow in-depth evaluation of important outcomes. Fertility preservation guidelines will help patients and their families make informed decisions and contribute to their long-term well-being.

Original languageEnglish
Pages (from-to)227-237
Number of pages11
JournalEuropean Journal of Cancer
Publication statusPublished - 1 Nov 2018


  • Childhood cancer survivors
  • Gonadal impairment
  • Guidelines
  • Late effects
  • Ototoxicity
  • Quality of life


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