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. 2018 Nov:103:227-237.
doi: 10.1016/j.ejca.2018.08.007. Epub 2018 Sep 29.

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  1 , Desiree Grabow  2 , Helen Campbell  3 , Kylie O'Brien  4 , Stefan Bielack  5 , Antoinette Am Zehnhoff-Dinnesen  6 , Gabriele Calaminus  7 , Leontien Kremer  8 , Thorsten Langer  9 , Marry M van den Heuvel-Eibrink  10 , Eline van Dulmen-den Broeder  11 , Katja Baust  7 , Andrea Bautz  12 , Jörn D Beck  13 , Claire Berger  14 , Harald Binder  15 , Anja Borgmann-Staudt  16 , Linda Broer  17 , Holger Cario  18 , Leonie Casagranda  19 , Eva Clemens  10 , Dirk Deuster  6 , Andrica de Vries  17 , Uta Dirksen  20 , Jeanette Falck Winther  21 , Sophie Fosså  22 , Anna Font-Gonzalez  23 , Victoria Grandage  24 , Riccardo Haupt  25 , Stefanie Hecker-Nolting  5 , Lars Hjorth  26 , Melanie Kaiser  2 , Line Kenborg  12 , Tomas Kepak  27 , Kateřina Kepáková  28 , Lisbeth E Knudsen  29 , Maryna Krawczuk-Rybak  30 , Jarmila Kruseova  31 , Claudia E Kuehni  32 , Marina Kunstreich  33 , Rahel Kuonen  32 , Herwig Lackner  34 , Alison Leiper  35 , Erik A H Loeffen  36 , Ales Luks  31 , Dalit Modan-Moses  37 , Renee Mulder  23 , Ross Parfitt  6 , Norbert W Paul  38 , Andreas Ranft  20 , Ellen Ruud  22 , Ralph Schilling  16 , Claudia Spix  2 , Joanna Stefanowicz  39 , Gabriele Strauβ  40 , Andre G Uitterlinden  17 , Marleen van den Berg  11 , Anne-Lotte van der Kooi  10 , Marloes van Dijk  11 , Flora van Leeuwen  41 , Oliver Zolk  42 , Daniela Zöller  15 , Peter Kaatsch  2 ; PanCareLIFE consortium
Collaborators, Affiliations

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 et al. Eur J Cancer. 2018 Nov.

Abstract

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.

Keywords: Childhood cancer survivors; Gonadal impairment; Guidelines; Late effects; Ototoxicity; Quality of life.

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