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

J Byrne; D Grabow; H Campbell; K O'Brien; S Bielack; AA Zehnhoff-Dinnesen; G Calaminus; L Kremer; T Langer; Marry Van den Heuvel - Eibrink; E van Dulmen-den Broeder; K Baust; A Bautz; JD Beck; C Berger; H Binder; A Borgmann-Staudt; Linda Broer; H Cario; L Casagranda; Eva Clemens; D Deuster; A.C.H. de Vries; U Dirksen; JF Winther; S Fossa; A Font-Gonzalez; V Grandage; R Haupt; S Hecker-Nolting; L Hjorth; M Kaiser; L Kenborg; T Kepak; K Kepakova; LE Knudsen; M Krawczuk-Rybak; J Kruseova; CE Kuehni; M Kunstreich; R Kuonen; H Lackner; A Leiper; EAH Loeffen; A Luks; D Modan-Moses; R Mulder; R Parfitt; NW Paul; A Ranft; E Ruud; R Schilling; C Spix; J Stefanowicz; G Strauss; AG Uitterlinden; M Berg; Anne-Lotte van der Kooi; Marloes van Dijk; F van Leeuwen; O Zolk; D Zoller; P Kaatsch

doi: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

J Byrne
, D Grabow
, H Campbell
, K O'Brien
, S Bielack
, AA Zehnhoff-Dinnesen
, G Calaminus
, L Kremer
, T Langer
, Marry Van den Heuvel - Eibrink
, E van Dulmen-den Broeder
, K Baust
, A Bautz
, JD Beck
, C Berger
, H Binder
, A Borgmann-Staudt
, Linda Broer
, H Cario
, L Casagranda

Eva Clemens, D Deuster, A.C.H. de Vries, U Dirksen, JF Winther, S Fossa, A Font-Gonzalez, V Grandage, R Haupt, S Hecker-Nolting, L Hjorth, M Kaiser, L Kenborg, T Kepak, K Kepakova, LE Knudsen, M Krawczuk-Rybak, J Kruseova, CE Kuehni, M Kunstreich, R Kuonen, H Lackner, A Leiper, EAH Loeffen, A Luks, D Modan-Moses, R Mulder, R Parfitt, NW Paul, A Ranft, E Ruud, R Schilling, C Spix, J Stefanowicz, G Strauss, AG Uitterlinden, M Berg, Anne-Lotte van der Kooi, Marloes van Dijk, F van Leeuwen, O Zolk, D Zoller, P Kaatsch

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

42 Citations (Scopus)

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
Number of pages	11
Journal	European Journal of Cancer
Volume	103
DOIs	https://doi.org/10.1016/j.ejca.2018.08.007
Publication status	Published - 2018

Bibliographical note

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

SDG 3 Good Health and Well-being

Research programs

EMC MM-01-39-09-A
EMC MM-02-54-03

Access to Document

10.1016/j.ejca.2018.08.007

http://hdl.handle.net/1765/110637

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Byrne, J., Grabow, D., Campbell, H., O'Brien, K., Bielack, S., Zehnhoff-Dinnesen, AA., Calaminus, G., Kremer, L., Langer, T., Van den Heuvel - Eibrink, M., van Dulmen-den Broeder, E., Baust, K., Bautz, A., Beck, JD., Berger, C., Binder, H., Borgmann-Staudt, A., Broer, L., Cario, H., ... Kaatsch, P. (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{a089b2ad88e44d9188addc81adc1f83d,

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 = "J Byrne and D Grabow and H Campbell and K O'Brien and S Bielack and AA Zehnhoff-Dinnesen and G Calaminus and L Kremer and T Langer and \{Van den Heuvel - Eibrink\}, Marry and \{van Dulmen-den Broeder\}, E and K Baust and A Bautz and JD Beck and C Berger and H Binder and A Borgmann-Staudt and Linda Broer and H Cario and L Casagranda and Eva Clemens and D Deuster and \{de Vries\}, A.C.H. and U Dirksen and JF Winther and S Fossa and A Font-Gonzalez and V Grandage and R Haupt and S Hecker-Nolting and L Hjorth and M Kaiser and L Kenborg and T Kepak and K Kepakova and LE Knudsen and M Krawczuk-Rybak and J Kruseova and CE Kuehni and M Kunstreich and R Kuonen and H Lackner and A Leiper and EAH Loeffen and A Luks and D Modan-Moses and R Mulder and R Parfitt and NW Paul and A Ranft and E Ruud and R Schilling and C Spix and J Stefanowicz and G Strauss and AG Uitterlinden and M Berg and \{van der Kooi\}, Anne-Lotte and \{van Dijk\}, Marloes and \{van Leeuwen\}, F and O Zolk and D Zoller and P Kaatsch",

year = "2018",

doi = "10.1016/j.ejca.2018.08.007",

language = "English",

volume = "103",

pages = "227--237",

journal = "European Journal of Cancer",

issn = "0959-8049",

publisher = "Elsevier Ltd.",

}

Byrne, J, Grabow, D, Campbell, H, O'Brien, K, Bielack, S, Zehnhoff-Dinnesen, AA, Calaminus, G, Kremer, L, Langer, T, Van den Heuvel - Eibrink, M, van Dulmen-den Broeder, E, Baust, K, Bautz, A, Beck, JD, Berger, C, Binder, H, Borgmann-Staudt, A, Broer, L, Cario, H, Casagranda, L, Clemens, E, Deuster, D, de Vries, ACH, Dirksen, U, Winther, JF, Fossa, S, Font-Gonzalez, A, Grandage, V, Haupt, R, Hecker-Nolting, S, Hjorth, L, Kaiser, M, Kenborg, L, Kepak, T, Kepakova, 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, Strauss, G, Uitterlinden, AG, Berg, M, van der Kooi, A-L, van Dijk, M, van Leeuwen, F, Zolk, O, Zoller, D & Kaatsch, P 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, J; Grabow, D; Campbell, H 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, J

AU - Grabow, D

AU - Campbell, H

AU - O'Brien, K

AU - Bielack, S

AU - Zehnhoff-Dinnesen, AA

AU - Calaminus, G

AU - Kremer, L

AU - Langer, T

AU - Van den Heuvel - Eibrink, Marry

AU - van Dulmen-den Broeder, E

AU - Baust, K

AU - Bautz, A

AU - Beck, JD

AU - Berger, C

AU - Binder, H

AU - Borgmann-Staudt, A

AU - Broer, Linda

AU - Cario, H

AU - Casagranda, L

AU - Clemens, Eva

AU - Deuster, D

AU - de Vries, A.C.H.

AU - Dirksen, U

AU - Winther, JF

AU - Fossa, S

AU - Font-Gonzalez, A

AU - Grandage, V

AU - Haupt, R

AU - Hecker-Nolting, S

AU - Hjorth, L

AU - Kaiser, M

AU - Kenborg, L

AU - Kepak, T

AU - Kepakova, K

AU - Knudsen, LE

AU - Krawczuk-Rybak, M

AU - Kruseova, J

AU - Kuehni, CE

AU - Kunstreich, M

AU - Kuonen, R

AU - Lackner, H

AU - Leiper, A

AU - Loeffen, EAH

AU - Luks, A

AU - Modan-Moses, D

AU - Mulder, R

AU - Parfitt, R

AU - Paul, NW

AU - Ranft, A

AU - Ruud, E

AU - Schilling, R

AU - Spix, C

AU - Stefanowicz, J

AU - Strauss, G

AU - Uitterlinden, AG

AU - Berg, M

AU - van der Kooi, Anne-Lotte

AU - van Dijk, Marloes

AU - van Leeuwen, F

AU - Zolk, O

AU - Zoller, D

AU - Kaatsch, P

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.

U2 - 10.1016/j.ejca.2018.08.007

DO - 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 -