SPAGN publications
Bedside rationing in cancer care: Patient advocate perspective
Ornella Gonzato, SPAGN board member
Clinical Ethics. 2022;17(4):358-362.
doi:10.1177/14777509211070486
https://journals.sagepub.com/doi/full/10.1177/14777509211070486
Setting the international research agenda for sarcoma together with patients and carers: first results of the Sarcoma Patient EuroNet (SPAEN) priority setting partnership
https://www.esmoopen.com/article/S2059-7029(22)00129-6/fulltext
Published in ESMO Open, June 2022
Unmet Medical Needs and Future Perspectives for Leiomyosarcoma Patients — A Position Paper from the National LeioMyoSarcoma Foundation (NLMSF) and Sarcoma Patients EuroNet (SPAEN)
https://www.mdpi.com/2072-6694/13/4/886
Published in Cancers, February 2021
The Management of Desmoid Tumors: A joint global evidence-based consensus guideline approach for adult and pediatric patients
by the Desmoid Working Group, published in the "European Journal of Cancer" in October 2019
https://www.ejcancer.com/article/S0959-8049(19)30832-9/fulltext
Incorporating the Patient Voice in Sarcoma Research: How Can We Assess Health-Related Quality of Life in This Heterogeneous Group of Patients? A Study Protocol
Dide den Hollander, Marco Fiore, Javier Martin-Broto, Bernd Kasper, Antonio Casado Herraez, Dagmara Kulis, Ioanna Nixon, Samantha C. Sodergren, Martin Eichler, Winan J. van Houdt, Ingrid M. E. Desar, Isabelle Ray-Coquard, Claire Piccinin, Hanna Kosela-Paterczyk, Aisha Miah, Leopold Hentschel, Susanne Singer, Roger Wilson, Winette T. A. van der Graaf and Olga Husson
Cancers 2021, 13(1), 1; https://doi.org/10.3390/cancers13010001
Published: 22 December 2020
The evolving role of patient advocates in rare cancers: opportunities and challenges
Ornella Gonzato and Alessandro Gronchi
Expert Review of Pharmacoeconomics & Outcomes Research, Volume 19, 2019, Issue 1
https://doi.org/10.1080/14737167.2019.1526083
https://www.tandfonline.com/doi/full/10.1080/14737167.2019.1526083
The Challenge of Sarcomas - the Patient Advocacy Group Perspective
Roger Wilson
Clinical Sarcoma Research. DOI: 10.1186/s13569-019-0121-6
https://rdcu.be/bKM3k
Working to improve the management of sarcoma patients across Europe: a policy checklist
Bernd Kasper, Estelle Lecointe-Artzner, Suzanne Wait, Shannon Boldon, Roger Wilson, Alessandro Gronchi, Claudia Valverde, Mikael Eriksson, Sarah Dumont, Nora Drove, Athanasia Kanli and Markus Wartenberg
BMCCancer (2018) 18:424 https://doi.org/10.1186/s12885-018-4320-y
The new risk-sharing paradigm in rare cancers: Patient perspective
by Ornella Gonzato, SPAGN board member
Journal of Cancer Policy, Volume 12, 2017, https://doi.org/10.1016/j.jcpo.2017.03.007.
https://www.sciencedirect.com/science/article/pii/S2213538316300583
Could information improve patient access to new emerging drugs in rare cancer trials?
Ornella Gonzato, SPAGN board member
Journal of Cancer Policy, Volume 8, 2016
https://doi.org/10.1016/j.jcpo.2016.04.001.
https://www.sciencedirect.com/science/article/pii/S2213538316300108