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.
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BORIS DOI
Publisher DOI
PubMed ID
30273888
Description
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.
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.
Date of Publication
2018-11
Publication Type
Article
Keyword(s)
Childhood cancer survivors Gonadal impairment Guidelines Late effects Ototoxicity Quality of life
Language(s)
en
Contributor(s)
Byrne, Julianne | |
Grabow, Desiree | |
Campbell, Helen | |
O'Brien, Kylie | |
Bielack, Stefan | |
Am Zehnhoff-Dinnesen, Antoinette | |
Calaminus, Gabriele | |
Kremer, Leontien | |
Langer, Thorsten | |
van den Heuvel-Eibrink, Marry M | |
van Dulmen-den Broeder, Eline | |
Baust, Katja | |
Bautz, Andrea | |
Beck, Jörn D | |
Berger, Claire | |
Binder, Harald | |
Borgmann-Staudt, Anja | |
Broer, Linda | |
Cario, Holger | |
Casagranda, Leonie | |
Clemens, Eva | |
Deuster, Dirk | |
de Vries, Andrica | |
Dirksen, Uta | |
Falck Winther, Jeanette | |
Fosså, Sophie | |
Font-Gonzalez, Anna | |
Grandage, Victoria | |
Haupt, Riccardo | |
Hecker-Nolting, Stefanie | |
Hjorth, Lars | |
Kaiser, Melanie | |
Kenborg, Line | |
Kepak, Tomas | |
Kepáková, Kateřina | |
Knudsen, Lisbeth E | |
Krawczuk-Rybak, Maryna | |
Kruseova, Jarmila | |
Kunstreich, Marina | |
Kuonen, Rahel | |
Lackner, Herwig | |
Leiper, Alison | |
Loeffen, Erik A H | |
Luks, Ales | |
Modan-Moses, Dalit | |
Mulder, Renee | |
Parfitt, Ross | |
Paul, Norbert W | |
Ranft, Andreas | |
Ruud, Ellen | |
Schilling, Ralph | |
Spix, Claudia | |
Stefanowicz, Joanna | |
Strauβ, Gabriele | |
Uitterlinden, Andre G | |
van den Berg, Marleen | |
van der Kooi, Anne-Lotte | |
van Dijk, Marloes | |
van Leeuwen, Flora | |
Zolk, Oliver | |
Zöller, Daniela | |
Kaatsch, Peter | |
consortium, PanCareLIFE |
Additional Credits
Series
European journal of cancer
Publisher
Elsevier
ISSN
0959-8049
Access(Rights)
restricted