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; J. rn D. Beck; Claire Berger; Harald Binder; Anja Borgmann-Staudt; Linda Broer; Holger Cario; Leonie Casagranda; Eva 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; P. Kaatsch; D. Grabow; J. Byrne; H. Campbell; C. Clissmann; K. O'Brien; L. C. M. Kremer; T. Langer; E. van Dulmen-den Broeder; Dr. M. H. van den Berg; M. M. van den Heuvel-Eibrink; A. Borgmann-Staudt; A. am Zehnhoff-Dinnesen; C. E. Kuehni; R. Haupt; T. Kepak; C. Berger; J. F. Winther; J. Kruseova; G. Calaminus; K. Baust; U. Dirksen; F. van Leeuwen; R. Schilling; G. Strauss; A. Ranft; M. L. Garré; C. Berger; S. Fosså; A. Leiper; H. Lackner; A. Panasiuk; Dr. M. Krawczuk-Rybak; M. Kunstreich; H. Cario; O. Zolk; S. Bielack; J. Stefanowicz; V. Grandage; D. Modan; Norbert W. Paul; Lisbeth E. Knudsen

doi:https://doi.org/10.1016/j.ejca.2018.08.007

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, J. rn 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, P. Kaatsch, D. Grabow, J. Byrne, H. Campbell, C. Clissmann, K. O'Brien, L. C. M. Kremer, T. Langer, E. van Dulmen-den Broeder, Dr. M. H. van den Berg, M. M. van den Heuvel-Eibrink, A. Borgmann-Staudt, A. am Zehnhoff-Dinnesen, C. E. Kuehni, R. Haupt, T. Kepak, C. Berger, J. F. Winther, J. Kruseova, G. Calaminus, K. Baust, U. Dirksen, F. van Leeuwen, R. Schilling, G. Strauss, A. Ranft, M. L. Garré, C. Berger, S. Fosså, A. Leiper, H. Lackner, A. Panasiuk, Dr. M. Krawczuk-Rybak, M. Kunstreich, H. Cario, O. Zolk, S. Bielack, J. Stefanowicz, V. Grandage, D. Modan, Norbert W. Paul, Lisbeth E. Knudsen

Research output: Contribution to journal › Article › Academic › peer-review

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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.

Original language	English
Pages (from-to)	227-237
Journal	European Journal of Cancer
Volume	103
DOIs	https://doi.org/10.1016/j.ejca.2018.08.007
Publication status	Published - 2018

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https://doi.org/10.1016/j.ejca.2018.08.007

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Byrne, J., Grabow, D., Campbell, H., O'Brien, K., Bielack, S., am Zehnhoff-Dinnesen, A., Calaminus, G., Kremer, L., Langer, T., van den Heuvel-Eibrink, M. M., van Dulmen-den Broeder, E., Baust, K., Bautz, A., Beck, J. R. D., Berger, C., Binder, H., Borgmann-Staudt, A., Broer, L., Cario, H., ... Knudsen, L. E. (2018). 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. European Journal of Cancer, 103, 227-237. https://doi.org/10.1016/j.ejca.2018.08.007

@article{6a7a291a006c453da78191db5e351e36,

title = "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",

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-M{\"u}llerian 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.",

author = "Julianne Byrne and Desiree Grabow and Helen Campbell and Kylie O'Brien and Stefan Bielack and {am Zehnhoff-Dinnesen}, Antoinette and Gabriele Calaminus and Leontien Kremer and Thorsten Langer and {van den Heuvel-Eibrink}, {Marry M.} and {van Dulmen-den Broeder}, Eline and Katja Baust and Andrea Bautz and Beck, {J. rn D.} and Claire Berger and Harald Binder and Anja Borgmann-Staudt and Linda Broer and Holger Cario and Leonie Casagranda and Eva Clemens and Dirk Deuster and {de Vries}, Andrica and Uta Dirksen and {Falck Winther}, Jeanette and Sophie Foss{\aa} and Anna Font-Gonzalez and Victoria Grandage and Riccardo Haupt and Stefanie Hecker-Nolting and Lars Hjorth and Melanie Kaiser and Line Kenborg and Tomas Kepak and Kate{\v r}ina Kep{\'a}kov{\'a} and Knudsen, {Lisbeth E.} and Maryna Krawczuk-Rybak and Jarmila Kruseova and Kuehni, {Claudia E.} and Marina Kunstreich and Rahel Kuonen and Herwig Lackner and Alison Leiper and Loeffen, {Erik A. H.} and Ales Luks and Dalit Modan-Moses and Renee Mulder and Ross Parfitt and Paul, {Norbert W.} and Andreas Ranft and Ellen Ruud and Ralph Schilling and Claudia Spix and Joanna Stefanowicz and Gabriele Strauβ and Uitterlinden, {Andre G.} and {van den Berg}, Marleen and {van der Kooi}, Anne-Lotte and {van Dijk}, Marloes and {van Leeuwen}, Flora and Oliver Zolk and Daniela Z{\"o}ller and Peter Kaatsch and P. Kaatsch and D. Grabow and J. Byrne and H. Campbell and C. Clissmann and K. O'Brien and Kremer, {L. C. M.} and T. Langer and {van Dulmen-den Broeder}, E. and {van den Berg}, {Dr. M. H.} and {van den Heuvel-Eibrink}, {M. M.} and A. Borgmann-Staudt and {am Zehnhoff-Dinnesen}, A. and Kuehni, {C. E.} and R. Haupt and T. Kepak and C. Berger and Winther, {J. F.} and J. Kruseova and G. Calaminus and K. Baust and U. Dirksen and {van Leeuwen}, F. and R. Schilling and G. Strauss and A. Ranft and Garr{\'e}, {M. L.} and C. Berger and S. Foss{\aa} and A. Leiper and H. Lackner and A. Panasiuk and Krawczuk-Rybak, {Dr. M.} and M. Kunstreich and H. Cario and O. Zolk and S. Bielack and J. Stefanowicz and V. Grandage and D. Modan and Paul, {Norbert W.} and Knudsen, {Lisbeth E.}",

year = "2018",

doi = "https://doi.org/10.1016/j.ejca.2018.08.007",

language = "English",

volume = "103",

pages = "227--237",

journal = "European Journal of Cancer",

issn = "0959-8049",

publisher = "Elsevier Limited",

}

Byrne, J, Grabow, D, Campbell, H, O'Brien, K, Bielack, S, am Zehnhoff-Dinnesen, A, Calaminus, G, Kremer, L, Langer, T, van den Heuvel-Eibrink, MM, van Dulmen-den Broeder, E, Baust, K, Bautz, A, Beck, JRD, Berger, C, Binder, H, Borgmann-Staudt, A, Broer, L, Cario, H, Casagranda, L, Clemens, E, Deuster, D, de Vries, A, Dirksen, U, Falck Winther, J, Fosså, S, Font-Gonzalez, A, Grandage, V, Haupt, R, Hecker-Nolting, S, Hjorth, L, Kaiser, M, Kenborg, L, Kepak, T, Kepáková, K, Knudsen, LE, Krawczuk-Rybak, M, Kruseova, J, Kuehni, CE, Kunstreich, M, Kuonen, R, Lackner, H, Leiper, A, Loeffen, EAH, Luks, A, Modan-Moses, D, Mulder, R, Parfitt, R, Paul, NW, Ranft, A, Ruud, E, Schilling, R, Spix, C, Stefanowicz, J, Strauβ, G, Uitterlinden, AG, van den Berg, M, van der Kooi, A-L, van Dijk, M, van Leeuwen, F, Zolk, O, Zöller, D, Kaatsch, P, Kaatsch, P, Grabow, D, Byrne, J, Campbell, H, Clissmann, C, O'Brien, K, Kremer, LCM, Langer, T, van Dulmen-den Broeder, E, van den Berg, DMH, van den Heuvel-Eibrink, MM, Borgmann-Staudt, A, am Zehnhoff-Dinnesen, A, Kuehni, CE, Haupt, R, Kepak, T, Berger, C, Winther, JF, Kruseova, J, Calaminus, G, Baust, K, Dirksen, U, van Leeuwen, F, Schilling, R, Strauss, G, Ranft, A, Garré, ML, Berger, C, Fosså, S, Leiper, A, Lackner, H, Panasiuk, A, Krawczuk-Rybak, DM, Kunstreich, M, Cario, H, Zolk, O, Bielack, S, Stefanowicz, J, Grandage, V, Modan, D, Paul, NW & Knudsen, LE 2018, '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', European Journal of Cancer, vol. 103, pp. 227-237. https://doi.org/10.1016/j.ejca.2018.08.007

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 et al.
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 - https://doi.org/10.1016/j.ejca.2018.08.007

DO - https://doi.org/10.1016/j.ejca.2018.08.007

M3 - Article

C2 - 30273888

SN - 0959-8049

VL - 103

SP - 227

EP - 237

JO - European Journal of Cancer

JF - European Journal of Cancer

ER -

Byrne J, Grabow D, Campbell H, O'Brien K, Bielack S, am Zehnhoff-Dinnesen A et al. 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. European Journal of Cancer. 2018;103:227-237. doi: https://doi.org/10.1016/j.ejca.2018.08.007

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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