Abstract
| Original language | English |
|---|---|
| Pages (from-to) | 227-237 |
| Journal | European Journal of Cancer |
| Volume | 103 |
| DOIs | |
| Publication status | Published - 2018 |
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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. / 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, J. rn 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; Kuehni, Claudia E.; 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; Kaatsch, P.; Grabow, D.; Byrne, J.; Campbell, H.; Clissmann, C.; O'Brien, K.; Kremer, L. C. M.; Langer, T.; van Dulmen-den Broeder, E.; van den Berg, Dr. M. H.; van den Heuvel-Eibrink, M. M.; Borgmann-Staudt, A.; am Zehnhoff-Dinnesen, A.; Kuehni, C. E.; Haupt, R.; Kepak, T.; Berger, C.; Winther, J. F.; Kruseova, J.; Calaminus, G.; Baust, K.; Dirksen, U.; van Leeuwen, F.; Schilling, R.; Strauss, G.; Ranft, A.; Garré, M. L.; Berger, C.; Fosså, S.; Leiper, A.; Lackner, H.; Panasiuk, A.; Krawczuk-Rybak, Dr. M.; Kunstreich, M.; Cario, H.; Zolk, O.; Bielack, S.; Stefanowicz, J.; Grandage, V.; Modan, D.; Paul, Norbert W.; Knudsen, Lisbeth E.
In: European Journal of Cancer, Vol. 103, 2018, p. 227-237.Research output: Contribution to journal › Article › Academic › peer-review
TY - JOUR
T1 - 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
AU - Byrne, Julianne
AU - Grabow, Desiree
AU - Campbell, Helen
AU - O'Brien, Kylie
AU - Bielack, Stefan
AU - am Zehnhoff-Dinnesen, Antoinette
AU - Calaminus, Gabriele
AU - Kremer, Leontien
AU - Langer, Thorsten
AU - van den Heuvel-Eibrink, Marry M.
AU - van Dulmen-den Broeder, Eline
AU - Baust, Katja
AU - Bautz, Andrea
AU - Beck, J. rn D.
AU - Berger, Claire
AU - Binder, Harald
AU - Borgmann-Staudt, Anja
AU - Broer, Linda
AU - Cario, Holger
AU - Casagranda, Leonie
AU - Clemens, Eva
AU - Deuster, Dirk
AU - de Vries, Andrica
AU - Dirksen, Uta
AU - Falck Winther, Jeanette
AU - Fosså, Sophie
AU - Font-Gonzalez, Anna
AU - Grandage, Victoria
AU - Haupt, Riccardo
AU - Hecker-Nolting, Stefanie
AU - Hjorth, Lars
AU - Kaiser, Melanie
AU - Kenborg, Line
AU - Kepak, Tomas
AU - Kepáková, Kateřina
AU - Knudsen, Lisbeth E.
AU - Krawczuk-Rybak, Maryna
AU - Kruseova, Jarmila
AU - Kuehni, Claudia E.
AU - Kunstreich, Marina
AU - Kuonen, Rahel
AU - Lackner, Herwig
AU - Leiper, Alison
AU - Loeffen, Erik A. H.
AU - Luks, Ales
AU - Modan-Moses, Dalit
AU - Mulder, Renee
AU - Parfitt, Ross
AU - Paul, Norbert W.
AU - Ranft, Andreas
AU - Ruud, Ellen
AU - Schilling, Ralph
AU - Spix, Claudia
AU - Stefanowicz, Joanna
AU - Strauβ, Gabriele
AU - Uitterlinden, Andre G.
AU - van den Berg, Marleen
AU - van der Kooi, Anne-Lotte
AU - van Dijk, Marloes
AU - van Leeuwen, Flora
AU - Zolk, Oliver
AU - Zöller, Daniela
AU - Kaatsch, Peter
AU - Kaatsch, P.
AU - Grabow, D.
AU - Byrne, J.
AU - Campbell, H.
AU - Clissmann, C.
AU - O'Brien, K.
AU - Kremer, L. C. M.
AU - Langer, T.
AU - van Dulmen-den Broeder, E.
AU - van den Berg, Dr. M. H.
AU - van den Heuvel-Eibrink, M. M.
AU - Borgmann-Staudt, A.
AU - am Zehnhoff-Dinnesen, A.
AU - Kuehni, C. E.
AU - Haupt, R.
AU - Kepak, T.
AU - Berger, C.
AU - Winther, J. F.
AU - Kruseova, J.
AU - Calaminus, G.
AU - Baust, K.
AU - Dirksen, U.
AU - van Leeuwen, F.
AU - Schilling, R.
AU - Strauss, G.
AU - Ranft, A.
AU - Garré, M. L.
AU - Berger, C.
AU - Fosså, S.
AU - Leiper, A.
AU - Lackner, H.
AU - Panasiuk, A.
AU - Krawczuk-Rybak, Dr. M.
AU - Kunstreich, M.
AU - Cario, H.
AU - Zolk, O.
AU - Bielack, S.
AU - Stefanowicz, J.
AU - Grandage, V.
AU - Modan, D.
AU - Paul, Norbert W.
AU - Knudsen, Lisbeth E.
PY - 2018
Y1 - 2018
N2 - 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.
AB - 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.
UR - https://www.scopus.com/inward/record.uri?partnerID=HzOxMe3b&scp=85054024028&origin=inward
UR - https://www.ncbi.nlm.nih.gov/pubmed/30273888
U2 - 10.1016/j.ejca.2018.08.007
DO - 10.1016/j.ejca.2018.08.007
M3 - Article
C2 - 30273888
VL - 103
SP - 227
EP - 237
JO - European Journal of Cancer
JF - European Journal of Cancer
SN - 0959-8049
ER -