Julianne Byrne1, Desiree Grabow2, Helen Campbell3, Kylie O'Brien4, Stefan Bielack5, Antoinette Am Zehnhoff-Dinnesen6, Gabriele Calaminus7, Leontien Kremer8, Thorsten Langer9, Marry M van den Heuvel-Eibrink10, Eline van Dulmen-den Broeder11, Katja Baust7, Andrea Bautz12, Jörn D Beck13, Claire Berger14, Harald Binder15, Anja Borgmann-Staudt16, Linda Broer17, Holger Cario18, Leonie Casagranda19, Eva Clemens10, Dirk Deuster6, Andrica de Vries17, Uta Dirksen20, Jeanette Falck Winther21, Sophie Fosså22, Anna Font-Gonzalez23, Victoria Grandage24, Riccardo Haupt25, Stefanie Hecker-Nolting5, Lars Hjorth26, Melanie Kaiser2, Line Kenborg12, Tomas Kepak27, Kateřina Kepáková28, Lisbeth E Knudsen29, Maryna Krawczuk-Rybak30, Jarmila Kruseova31, Claudia E Kuehni32, Marina Kunstreich33, Rahel Kuonen32, Herwig Lackner34, Alison Leiper35, Erik A H Loeffen36, Ales Luks31, Dalit Modan-Moses37, Renee Mulder23, Ross Parfitt6, Norbert W Paul38, Andreas Ranft20, Ellen Ruud22, Ralph Schilling16, Claudia Spix2, Joanna Stefanowicz39, Gabriele Strauβ40, Andre G Uitterlinden17, Marleen van den Berg11, Anne-Lotte van der Kooi10, Marloes van Dijk11, Flora van Leeuwen41, Oliver Zolk42, Daniela Zöller15, Peter Kaatsch2. 1. Boyne Research Institute, 5 Bolton Square, East, Drogheda, Co. Louth A92 RY6K, Ireland. Electronic address: jbyrne@boyneresearch.ie. 2. German Childhood Cancer Registry (GCCR), Institute of Medical Biostatistics, Epidemiology and Informatics, University Medical Center, Mainz, Germany. 3. Boyne Research Institute, 5 Bolton Square, East, Drogheda, Co. Louth A92 RY6K, Ireland. 4. Pintail Ltd, Dublin, Ireland. 5. Department of Paediatrics &- Oncology, Hematology and Immunology, Centre for Paediatric, Adolescent and Women's Medicine, Klinikum Stuttgart - Olgahospital, Stuttgart, Germany. 6. Department for Phoniatrics and Pedaudiology, Universitätsklinikum, Münster, Germany. 7. Department of Paediatric Haematology and Oncology Universitätsklinikum, Bonn, Germany. 8. Department Pediatric Oncology, Emma Children's Hospital/Academic Medical Center (AMC), Amsterdam, The Netherlands; Prinses Máxima Center for Paediatric Oncology, Utrecht, The Netherlands. 9. Paediatric Oncology and Hematology, University Hospital for Children and Adolescents, University zu Lübeck, Lübeck, Germany. 10. Prinses Máxima Center for Paediatric Oncology, Utrecht, The Netherlands; Erasmus MC - Sophia Children's Hospital, Rotterdam, The Netherlands. 11. Amsterdam UMC, Vrije Universiteit Amsterdam, Pediatrics, Cancer Centre Amsterdam, Amsterdam, The Netherlands. 12. Danish Cancer Society Research Center, Copenhagen, Denmark. 13. Klinik für Kinder und Jugendliche, Friedrich-Alexander- Universität, Erlangen, Nürnberg, Germany. 14. Department of Paediatric Hematology and Oncology Unit, University Hospital of Saint-Étienne, Saint-Étienne, France; Epidemiology of Childhood and Adolescent Cancers, CRESS, INSERM, UMR 1153, Paris Descartes University, Villejuif, France. 15. Institute of Medical Biometry and Statistics, Faculty of Medicine and Medical Center, University of Freiburg, Freiburg, Germany. 16. Charité - Universitätsmedizin, Berlin, Germany. 17. Erasmus MC - Sophia Children's Hospital, Rotterdam, The Netherlands. 18. Department of Paediatrics and Adolescent Medicine, University Medical Center Ulm, Ulm, Germany. 19. Department of Paediatric Hematology and Oncology Unit, University Hospital of Saint-Étienne, Saint-Étienne, France. 20. Pediatrics III, Pediatric Hematology and Oncology, West German Cancer Centre, University Hospital, Essen, Germany. 21. Danish Cancer Society Research Center, Copenhagen, Denmark; Department of Clinical Medicine, Faculty of Health, Aarhus University, Aarhus, Denmark. 22. Institutt for Klinisk Medisin, Universitetet I Oslo, Oslo, Norway. 23. Department Pediatric Oncology, Emma Children's Hospital/Academic Medical Center (AMC), Amsterdam, The Netherlands. 24. University College London Hospital, London, UK. 25. Epidemiology and Biostatistics Unit and Italian Off-Therapy Registry (OTR), Istituto Giannina Gaslini, Via Gerolamo Gaslini, 5, 16148, Genova, Italy. 26. Department of Paediatrics, Lund University, Skåne University Hospital, Lund, Sweden. 27. University Hospital Brno, Brno, Czech Republic; International Clinical Research Center (FNUSA-ICRC), Brno, Czech Republic. 28. University Hospital Brno, Brno, Czech Republic. 29. Institute of Public Health, University of Copenhagen, Copenhagen, Denmark. 30. Medical University of Bialystok, Bialystok, Poland. 31. Motol Teaching Hospital, Prague, Czech Republic. 32. Swiss Childhood Cancer Registry, Institute of Social and Preventive Medicine, University of Bern, Bern, Switzerland. 33. Department of Paediatric Oncology, Haematology and Immunology, Medical Faculty, Heinrich-Heine-University of Düsseldorf, Düsseldorf, Germany. 34. Department of Paediatrics and Adolescent Medicine, Medical University of Graz, Graz, Austria. 35. Great Ormond Street Children's Hospital, London, UK. 36. Department of Pediatric Oncology/Hematology, University of Groningen, Beatrix Children's Hospital, University Medical Center Groningen, Groningen, the Netherlands. 37. Edmond and Lily Safra Children's Hospital, Chaim Sheba Medical Center, Tel Hashomer, Israel; The Sakler Faculty of Medicine, Tel-Aviv University, Tel-Aviv, Israel. 38. Institute for the History, Philosophy, and Ethics of Medicine, Johannes Gutenberg University Center Mainz, Mainz, Germany. 39. Klinika Pediatrii, Hematologii I Onkologii, Medical University, Gdansk, Poland. 40. Helios Kliniken Berlin-Buch, Klinik Für Kinder-und Jungendmedizin, Berlin, Germany. 41. Netherlands Cancer Institute, Antoni van Leeuwenhoek Hospital, Amsterdam, The Netherlands. 42. Institute of Pharmacology of Natural Products and Clinical Pharmacology, University Hospital Ulm, Ulm, Germany.
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.
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.
Authors: Anne-Lotte L F van der Kooi; Marloes van Dijk; Linda Broer; Marleen H van den Berg; Joop S E Laven; Flora E van Leeuwen; Cornelis B Lambalk; Annelies Overbeek; Jacqueline J Loonen; Helena J van der Pal; Wim J Tissing; Birgitta Versluys; Dorine Bresters; Catharina C M Beerendonk; Cécile R Ronckers; Margriet van der Heiden-van der Loo; Gertjan L Kaspers; Andrica C H de Vries; Leslie L Robison; Melissa M Hudson; Wassim Chemaitilly; Julianne Byrne; Claire Berger; Eva Clemens; Uta Dirksen; Jeanette Falck Winther; Sophie D Fosså; Desiree Grabow; Riccardo Haupt; Melanie Kaiser; Tomas Kepak; Jarmila Kruseova; Dalit Modan-Moses; Saskia M F Pluijm; Claudia Spix; Oliver Zolk; Peter Kaatsch; Jesse H Krijthe; Leontien C Kremer; Yutaka Yasui; Russell J Brooke; André G Uitterlinden; Marry M van den Heuvel-Eibrink; Eline van Dulmen-den Broeder Journal: Hum Reprod Date: 2021-03-18 Impact factor: 6.918
Authors: M E Madeleine van der Perk; Linda Broer; Yutaka Yasui; Leslie L Robison; Melissa M Hudson; Joop S E Laven; Helena J van der Pal; Wim J E Tissing; Birgitta Versluys; Dorine Bresters; Gertjan J L Kaspers; Andrica C H de Vries; Cornelis B Lambalk; Annelies Overbeek; Jacqueline J Loonen; Catharina C M Beerendonk; Julianne Byrne; Claire Berger; Eva Clemens; Uta Dirksen; Jeanette Falck Winther; Sophie D Fosså; Desiree Grabow; Monica Muraca; Melanie Kaiser; Tomáš Kepák; Jarmila Kruseova; Dalit Modan-Moses; Claudia Spix; Oliver Zolk; Peter Kaatsch; Jesse H Krijthe; Leontien C M Kremer; Russell J Brooke; Jessica L Baedke; Ron H N van Schaik; John N van den Anker; André G Uitterlinden; Annelies M E Bos; Flora E van Leeuwen; Eline van Dulmen-den Broeder; Anne-Lotte L F van der Kooi; Marry M van den Heuvel-Eibrink Journal: Cancers (Basel) Date: 2021-09-13 Impact factor: 6.639
Authors: M E Madeleine van der Perk; Nicholas G Cost; Annelies M E Bos; Robert Brannigan; Tanzina Chowdhury; Andrew M Davidoff; Najat C Daw; Jeffrey S Dome; Peter Ehrlich; Norbert Graf; James Geller; John Kalapurakal; Kathleen Kieran; Marcus Malek; Mary F McAleer; Elizabeth Mullen; Luke Pater; Angela Polanco; Rodrigo Romao; Amanda F Saltzman; Amy L Walz; Andrew D Woods; Marry M van den Heuvel-Eibrink; Conrad V Fernandez Journal: Int J Cancer Date: 2022-05-11 Impact factor: 7.316
Authors: Thorsten Langer; Eva Clemens; Linda Broer; Lara Maier; André G Uitterlinden; Andrica C H de Vries; Martine van Grotel; Saskia F M Pluijm; Harald Binder; Benjamin Mayer; Annika von dem Knesebeck; Julianne Byrne; Eline van Dulmen-den Broeder; Marco Crocco; Desiree Grabow; Peter Kaatsch; Melanie Kaiser; Claudia Spix; Line Kenborg; Jeanette F Winther; Catherine Rechnitzer; Henrik Hasle; Tomas Kepak; Anne-Lotte F van der Kooi; Leontien C Kremer; Jarmila Kruseova; Stefan Bielack; Benjamin Sorg; Stefanie Hecker-Nolting; Claudia E Kuehni; Marc Ansari; Martin Kompis; Heleen J van der Pal; Ross Parfitt; Dirk Deuster; Peter Matulat; Amelie Tillmanns; Wim J E Tissing; Jörn D Beck; Susanne Elsner; Antoinette Am Zehnhoff-Dinnesen; Marry M van den Heuvel-Eibrink; Oliver Zolk Journal: Data Brief Date: 2020-08-24
Authors: Joost A M Verlouw; Eva Clemens; Jard H de Vries; Oliver Zolk; Annemieke J M H Verkerk; Antoinette Am Zehnhoff-Dinnesen; Carolina Medina-Gomez; Claudia Lanvers-Kaminsky; Fernando Rivadeneira; Thorsten Langer; Joyce B J van Meurs; Marry M van den Heuvel-Eibrink; André G Uitterlinden; Linda Broer Journal: Eur J Hum Genet Date: 2021-06-18 Impact factor: 4.246