TY - JOUR
T1 - Fertility among female survivors of childhood, adolescent, and young adult cancer: Protocol for two Pan-European Studies (PanCareLIFE)
AU - The PanCareLIFE Consortium
AU - van den Berg, Marleen
AU - van Dijk, Marloes
AU - Byrne, Julianne
AU - Campbell, Helen
AU - Berger, Claire
AU - Borgmann-Staudt, Anja
AU - Calaminus, Gabriele
AU - Dirksen, Uta
AU - Winther, Jeanette F.
AU - Fossa, Sophie D.
AU - Grabow, Desiree
AU - Grandage, Victoria L.
AU - van den Heuvel-Eibrink, Marry M.
AU - Kaiser, Melanie
AU - Kepak, Tomas
AU - Kremer, Leontien C.
AU - Kruseova, Jarmila
AU - Kuehni, Claudia E.
AU - Lambalk, Cornelis B.
AU - van Leeuwen, Flora E.
AU - Leiper, Alison
AU - Modan-Moses, Dalit
AU - Morsellino, Vera
AU - Spix, Claudia
AU - Kaatsch, Peter
AU - van Dulmen-Den Broeder, Eline
AU - Clissmann, C.
AU - O’Brien, K.
AU - Kremer, L. C.M.
AU - Langer, T.
AU - Am Zehnhoff-Dinnesen, A.
AU - Haupt, R.
AU - Muraca, Monica
AU - Baust, K.
AU - Strauß, G.
AU - Garré, M. L.
AU - Fosså, S.
AU - Lackner, H.
AU - Kager, L.
AU - Panasiuk, A.
AU - Krawczuk-Rybak, M.
AU - Kunstreich, M.
AU - Borkhardt, A.
AU - Cario, H.
AU - Zolk, O.
AU - Bielack, S.
AU - Stefanowicz, J.
N1 - Funding Information:
We gratefully thank all the patients and survivors who provided their data for research and for PanCareLIFE. This project received funding from the European Union’s Seventh Framework Programme for research, technological development and demonstration under grant agreement number 602030.
Funding Information:
PanCareLIFE (Grant Agreement no. 602030) is a collaborative project in the 7th Framework Programme of the European Union. Project partners are: Universitätsmedizin der Johannes Gutenberg-Universität Mainz, Germany (PD Dr P Kaatsch, Dr D Grabow), Boyne Research Institute, Drogheda, Ireland (Dr J Byrne, Ms H Campbell), Pintail Ltd, Dublin, Ireland (Mr C Clissmann, Dr K O’Brien), Academisch Medisch Centrum bij de Universiteitvan Amsterdam, Netherlands (Dr LCM Kremer), Universität zu Lübeck, Germany (Professor T Langer), Stichting VU-VUMC, Amsterdam, Netherlands (Dr E van Dulmen-den Broeder, Dr MH van den Berg), Erasmus Universitair Medisch Centrum Rotterdam, Netherlands (Dr MM van den Heuvel-Eibrink), Charité–Universitätsmedizin Berlin, Germany (PD Dr A Borgmann-Staudt), Westfälische Wilhelms-Universität Münster, Germany (Professor A am Zehnhoff-Dinnesen), Universität Bern, Switzerland (Professor CE Kuehni), Istituto Giannina Gaslini, Genoa, Italy (Dr R Haupt, Dr Monica Muraca), Fakultni nemocnice Brno, Czech Republic (Dr T Kepak), International Clinical Research Center (FNUSA-ICRC) (Dr T Kepak), Centre Hospitalier Universitaire Saint Etienne-CHU, Saint Etienne, France (Dr C Berger), Kraeftens Bekaempelse, Copenhagen, Denmark (Dr JF Winther), Fakultni nemocnice v Motol, Prague, Czech Republic (Dr J Kruseova) and Universitaetsklinikum Bonn, Bonn, Germany (Dr G Calaminus, Dr K Baust). Data are provided by: Academisch Medisch Centrum bij de Universiteit van Amsterdam, on behalf of the DCOG LATER Study centres, Netherlands (Dr LCM Kremer), Stichting VU-VUMC, Amsterdam, Netherlands (Dr E van Dulmen-den Broeder, Dr MH van den Berg), Erasmus Universitair Medisch Centrum Rotterdam, Netherlands (Dr MM van den Heuvel-Eibrink), Prinses Maxima Centrum (Dr MM van den Heuvel-Eibrink), Netheralnds Netherlands Cancer Institute (Professor F van Leeuwen), Charité-Universitätsmedizin Berlin, Germany (PD Dr. A Borgmann-Staudt, Dr G Strauß), Westfälische Wilhelms-Universität Münster, Germany (Professor A am Zehnhoff-Dinnesen, Professor U Dirksen), Universität Bern, Switzerland (Professor CE Kuehni), Istituto Giannina Gaslini, Genoa, Italy (Dr R Haupt, Dr Monica Muraca, Dr M-L Garré), Fakultni nemocnice Brno, Czech Republic (Dr T Kepak), International Clinical Research Center (FNUSA-ICRC) (Dr T Kepak), Centre Hospitalier Universitaire Saint Etienne, France (Dr C Berger), Kraeftens Bekaempelse, Copenhagen, Denmark (Dr JF Winther), Fakultni nemocnice v Motol, Prague, Czech Republic (Dr J Kruseova), Universitetet i Oslo, Norway (Professor S Fosså), Great Ormond Street Hospital (Dr A Leiper), Medizinische Universität Graz, Austria (Professor H Lackner), St Anna Kinderspital, Vienna, Austria (Dr L Kager), Uniwersytet Medyczny w Białymstoku, Bialystok, Poland (Dr A Panasiuk, Dr M Krawczuk-Rybak), Heinrich Heine Universität Düsseldorf, Germany (Dr M Kunstreich, Dr A Borkhardt), Universität Ulm, Germany (Dr H Cario, Professor O Zolk), Universität zu Lübeck, Germany (Professor T Langer), Klinikum Stuttgart, Olgahospital, Stuttgart, Germany (Professor S Bielack), Uniwersytet Gdánski, Poland (Professor J Stefanowicz), University College London Hospital, UK (Dr V Grandage), Sheba Medical Center Hospital, Tel Aviv, Israel (Dr D Modan-Moses) and Universitaetsklinikum Bonn, Bonn, Germany (Dr G Calaminus).
Publisher Copyright:
© The Author(s), 2018.
Copyright:
Copyright 2021 Elsevier B.V., All rights reserved.
PY - 2018/9/1
Y1 - 2018/9/1
N2 - Background: Despite a significant number of studies on female fertility following childhood, adolescent, and young adult (CAYA) cancer, studies establishing precise (dose-related) estimates of treatment-related risks are still scarce. Previous studies have been underpowered, did not include detailed treatment information, or were based on self-report only without any hormonal assessments. More precise assessments of who is at risk for sub- or infertility are needed. Objective: The objective of our study is to describe the design and methods of 2 studies on female fertility (a cohort study and a nested case-control study) among female survivors of CAYA cancer performed within the European PanCareLIFE project. Methods: For the cohort study, which aims to evaluate the overall risk of fertility impairment, as well as the risk for specific subgroups of female CAYA cancer survivors, 13 institutions from 9 countries provide data on fertility impairment. Survivors are defined as being fertility impaired if they meet at least one of 8 different criteria based on self-reported and hormonal data. For the nested case-control study, which aims to identify specific treatment-related risk factors associated with fertility impairment in addition to possible dose-response relationships, cases (fertility impaired survivors) are selected from the cohort study and matched to controls (survivors without fertility impairment) on a 1:2 basis. Results: Of the 10,964 survivors invited for the cohort study, data are available from 6619 survivors, either questionnaire-based only (n=4979), hormonal-based only (n=72), or both (n=1568). For the nested case-control study, a total of 450 cases and 882 controls are identified. Conclusions: Results of both PanCareLIFE fertility studies will provide detailed insight into the risk of fertility impairment following CAYA cancer and diagnostic- or treatment-related factors associated with an increased risk. This will help clinicians to adequately counsel both girls and young women, who are about to start anticancer treatment, as well as adult female CAYA cancer survivors, concerning future parenthood and to timely refer them for fertility preservation. Ultimately, we aim to empower patients and survivors and improve their quality of life.
AB - Background: Despite a significant number of studies on female fertility following childhood, adolescent, and young adult (CAYA) cancer, studies establishing precise (dose-related) estimates of treatment-related risks are still scarce. Previous studies have been underpowered, did not include detailed treatment information, or were based on self-report only without any hormonal assessments. More precise assessments of who is at risk for sub- or infertility are needed. Objective: The objective of our study is to describe the design and methods of 2 studies on female fertility (a cohort study and a nested case-control study) among female survivors of CAYA cancer performed within the European PanCareLIFE project. Methods: For the cohort study, which aims to evaluate the overall risk of fertility impairment, as well as the risk for specific subgroups of female CAYA cancer survivors, 13 institutions from 9 countries provide data on fertility impairment. Survivors are defined as being fertility impaired if they meet at least one of 8 different criteria based on self-reported and hormonal data. For the nested case-control study, which aims to identify specific treatment-related risk factors associated with fertility impairment in addition to possible dose-response relationships, cases (fertility impaired survivors) are selected from the cohort study and matched to controls (survivors without fertility impairment) on a 1:2 basis. Results: Of the 10,964 survivors invited for the cohort study, data are available from 6619 survivors, either questionnaire-based only (n=4979), hormonal-based only (n=72), or both (n=1568). For the nested case-control study, a total of 450 cases and 882 controls are identified. Conclusions: Results of both PanCareLIFE fertility studies will provide detailed insight into the risk of fertility impairment following CAYA cancer and diagnostic- or treatment-related factors associated with an increased risk. This will help clinicians to adequately counsel both girls and young women, who are about to start anticancer treatment, as well as adult female CAYA cancer survivors, concerning future parenthood and to timely refer them for fertility preservation. Ultimately, we aim to empower patients and survivors and improve their quality of life.
UR - http://www.scopus.com/inward/record.url?scp=85096821402&partnerID=8YFLogxK
U2 - 10.2196/10824
DO - 10.2196/10824
M3 - Journal articles
AN - SCOPUS:85096821402
SN - 1929-0748
VL - 7
JO - JMIR Research Protocols
JF - JMIR Research Protocols
IS - 9
M1 - e10824
ER -
