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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, A. Am Zehnhoff-Dinnesen, G. Calaminus, L. Kremer, T. Langer, MM. van den Heuvel-Eibrink, E. van Dulmen-den Broeder, K. Baust, A. Bautz, JD. Beck, C. Berger, H. Binder, A. Borgmann-Staudt,...
Language English Country England, Great Britain
Document type Journal Article, Research Support, Non-U.S. Gov't
- MeSH
- Child MeSH
- Long-Term Care MeSH
- Adult MeSH
- Infant MeSH
- Quality of Life psychology MeSH
- Humans MeSH
- Adolescent MeSH
- Young Adult MeSH
- Neoplasms MeSH
- Infant, Newborn MeSH
- Pilot Projects MeSH
- Child, Preschool MeSH
- Survivors MeSH
- Feasibility Studies MeSH
- Fertility Preservation MeSH
- Check Tag
- Child MeSH
- Adult MeSH
- Infant MeSH
- Humans MeSH
- Adolescent MeSH
- Young Adult MeSH
- Male MeSH
- Infant, Newborn MeSH
- Child, Preschool MeSH
- Female MeSH
- Publication type
- Journal Article MeSH
- Research Support, Non-U.S. Gov't MeSH
- Geographicals
- Europe MeSH
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.
Boyne Research Institute 5 Bolton Square East Drogheda Co Louth A92 RY6K Ireland
Charité Universitätsmedizin Berlin Germany
Danish Cancer Society Research Center Copenhagen Denmark
Department for Phoniatrics and Pedaudiology Universitätsklinikum Münster Germany
Department of Clinical Medicine Faculty of Health Aarhus University Aarhus Denmark
Department of Paediatric Haematology and Oncology Universitätsklinikum Bonn Germany
Department of Paediatrics and Adolescent Medicine Medical University of Graz Graz Austria
Department of Paediatrics and Adolescent Medicine University Medical Center Ulm Ulm Germany
Department of Paediatrics Lund University Skåne University Hospital Lund Sweden
Edmond and Lily Safra Children's Hospital Chaim Sheba Medical Center Tel Hashomer Israel
Erasmus MC Sophia Children's Hospital Rotterdam The Netherlands
Great Ormond Street Children's Hospital London UK
Helios Kliniken Berlin Buch Klinik Für Kinder und Jungendmedizin Berlin Germany
Institute of Public Health University of Copenhagen Copenhagen Denmark
Institutt for Klinisk Medisin Universitetet 1 Oslo Oslo Norway
International Clinical Research Center Brno Czech Republic
Klinik für Kinder und Jugendliche Friedrich Alexander Universität Erlangen Nürnberg Germany
Klinika Pediatrii Hematologii 1 Onkologii Medical University Gdansk Poland
Medical University of Bialystok Bialystok Poland
Motol Teaching Hospital Prague Czech Republic
Netherlands Cancer Institute Antoni van Leeuwenhoek Hospital Amsterdam The Netherlands
Prinses Máxima Center for Paediatric Oncology Utrecht The Netherlands
The Sakler Faculty of Medicine Tel Aviv University Tel Aviv Israel
References provided by Crossref.org
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- $a Byrne, Julianne $u Boyne Research Institute, 5 Bolton Square, East, Drogheda, Co. Louth A92 RY6K, Ireland. Electronic address: jbyrne@boyneresearch.ie.
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- $a 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 / $c J. Byrne, D. Grabow, H. Campbell, K. O'Brien, S. Bielack, A. Am Zehnhoff-Dinnesen, G. Calaminus, L. Kremer, T. Langer, MM. van den Heuvel-Eibrink, E. van Dulmen-den Broeder, K. Baust, A. Bautz, JD. Beck, C. Berger, H. Binder, A. Borgmann-Staudt, L. Broer, H. Cario, L. Casagranda, E. Clemens, D. Deuster, A. de Vries, U. Dirksen, J. Falck Winther, S. Fosså, A. Font-Gonzalez, V. Grandage, R. Haupt, S. Hecker-Nolting, L. Hjorth, M. Kaiser, L. Kenborg, T. Kepak, K. Kepáková, 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. Strauβ, AG. Uitterlinden, M. van den Berg, AL. van der Kooi, M. van Dijk, F. van Leeuwen, O. Zolk, D. Zöller, P. Kaatsch, PanCareLIFE consortium,
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