SPAGN publications

Books-wallpaper_Patrick Tomasso Unsplash_cut

What Is a Sarcoma ‘Specialist Center’? Multidisciplinary Research Finds an Answer
Roger Wilson, Denise Reinke, Gerard van Oortmerssen, Ornella Gonzato, Gabriele Ott, Chandrajit P. Raut, Ashleigh Guadagnolo, Rick L. M. Haas, Jonathan Trent, Robin Jones, Lauren Pretorius, Brandi Felser, Mandy Basson, Kathrin Schuster and Bernd Kasper
Cancers 2024, 16(10), 1857; (open access)

Best clinical management of tenosynovial giant cell tumour (TGCT): A consensus paper from the community of experts
Silvia Stacchiotti, Hans-Roland Duerr, Sydney Stern, Michiel van der Sande, Sebastian Bauer et al.
Cancer Treatment Reviews 112, 102491, January 2023
Open Access here

The role of patient advocates and sarcoma community initiatives in musculoskeletal oncology.
Moving towards Evidence-Based Advocacy to empower Evidence-Based Medicine

Ornella Gonzato, Kathrin Schuster, SPAGN
Journal of Cancer Policy, Volume 36, June 2023, 100413

Global Patient Involvement in Sarcoma Care-A Collaborative Initiative of the Connective Tissue Oncology Society (CTOS) & Sarcoma Patients EuroNet (SPAEN)
Bernd Kasper, Kathrin Schuster, Roger Wilson, Sorrel Bickley, Jean-Yves Blay, Denise Reinke, Markus Wartenberg, Rick Haas
Cancers 2022 Feb 9;14(4):854. doi: 10.3390/cancers14040854

Bedside rationing in cancer care: Patient advocate perspective
Ornella Gonzato, SPAGN board member
Clinical Ethics. 2022;17(4):358-362.

Setting the international research agenda for sarcoma together with patients and carers: first results of the Sarcoma Patient EuroNet (SPAEN) priority setting partnership
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)
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

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;
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

The Challenge of Sarcomas - the Patient Advocacy Group Perspective
Roger Wilson
Clinical Sarcoma Research. DOI: 10.1186/s13569-019-0121-6

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

The new risk-sharing paradigm in rare cancers: Patient perspective
by Ornella Gonzato, SPAGN board member
Journal of Cancer Policy, Volume 12, 2017,

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