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. 2018 Sep 14;7(9):e10824.
doi: 10.2196/10824.

Fertility Among Female Survivors of Childhood, Adolescent, and Young Adult Cancer: Protocol for Two Pan-European Studies (PanCareLIFE)

Marleen van den Berg #  1 , Marloes van Dijk #  1 , Julianne Byrne  2 , Helen Campbell  2 , Claire Berger  3 , Anja Borgmann-Staudt  4 , Gabriele Calaminus  5 , Uta Dirksen  6   7 , Jeanette F Winther  8   9 , Sophie D Fossa  10 , Desiree Grabow  11 , Victoria L Grandage  12 , Marry M van den Heuvel-Eibrink  13   14 , Melanie Kaiser  11 , Tomas Kepak  15 , Leontien C Kremer  13   16 , Jarmila Kruseova  17 , Claudia E Kuehni  18 , Cornelis B Lambalk  19 , Flora E van Leeuwen  20 , Alison Leiper  21 , Dalit Modan-Moses  22   23 , Vera Morsellino  24 , Claudia Spix  11 , Peter Kaatsch  11 , Eline van Dulmen-den Broeder  1 ; PanCareLIFE Consortium
Affiliations

Fertility Among Female Survivors of Childhood, Adolescent, and Young Adult Cancer: Protocol for Two Pan-European Studies (PanCareLIFE)

Marleen van den Berg et al. JMIR Res Protoc. .

Abstract

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.

Registered report identifier: RR1-10.2196/10824.

Keywords: case-control study; childhood cancer; cohort study; female; fertility; late effects.

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Conflict of interest statement

Conflicts of Interest: None declared.

Figures

Figure 1
Figure 1
Flow chart of eligible, invited, and participating subjects of the 2 fertility studies within the PanCareLIFE project.
See this image and copyright information in PMC

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