SPAGN publications
Setting the international research agenda for sarcomas with patients and carers: results of phase II of the Sarcoma Patient Advocacy Global Network (SPAGN) priority setting partnership
E. Roets, K. Schuster, S. Bickley, M. Wartenberg, O. Gonzato, N. Fernandez, B. Kasper, K. Pilgermann, R. Wilson, N. Steeghs, W. T. A. van der Graaf, G. van Oortmerssen & O. Husson
BMC Cancer 24, 962 (2024).
Open Access here
Current Management of Desmoid Tumors: A Review
Kasper BBaldini EHBonvalot S, et al.
JAMA Oncology 2024;10(8):1121–1128.
doi:10.1001/jamaoncol.2024.1805
Access here.
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; https://doi.org/10.3390/cancers16101857 (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
doi.org/10.1016/j.jcpo.2023.100413
https://www.sciencedirect.com/science/article/pii/S2213538323000309?dgcid=author
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
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8870105/
A study to learn if nirogacestat works and is safe for adult participants with desmoid tumors: a plain language summary of the DeFi study
Bernd Kasper, Jeanne Whiting, Dana Lawson, Marlene Portnoy, Kathrin Schuster, Christina Baumgarten, Ravin Ratan, Allison Lim, Sunny Cho, Shivaani Kummar & Mrinal Gounder.
https://www.tandfonline.com/doi/abs/10.1080/14796694.2025.2462519
Radiation Therapy as Sole Management for Solitary Fibrous Tumors (SFT): A Retrospective Study From the Global SFT Initiative in Collaboration With the Sarcoma Patients EuroNet
Rick L. Haas, MD, PhD, Iris Walraven, PhD, Estelle Lecointe-Artzner , Astrid N. Scholten, MD, PhD, Winan J. van Houdt, MD, PhD, Anthony M. Griffin, MS, Peter C. Ferguson, MD, PhD, Aisha B. Miah, MD, PhD, Shaine Zaidi, MD, PhD, Thomas F. DeLaney, MD, PhD, Yen-Lin Chen, MD, PhD, Mateusz Spalek, MD, Stijn D.G. Krol, MD, PhD, Rieneke G. Moeri-Schimmel, MD, Michiel A.J. van de Sande, MD, PhD, Claudia Sangalli, MSc, Silvia Stacchiotti, MD, PhD
Red Journal, Volume 101, Issue 5p1011-1278
Access here
Extrameningeal solitary fibrous tumors—surgery alone or surgery plus perioperative radiotherapy: A retrospective study from the global solitary fibrous tumor initiative in collaboration with the Sarcoma Patients EuroNet
Rick L. Haas MD, PhD, Iris Walraven MD, PhD, Estelle Lecointe-Artzner MD, PhD, Winan J. van Houdt MD, PhD, Dirk Strauss MD, PhD, Yvonne Schrage MD, PhD, Andrew J. Hayes MD, PhD, Chandrajit P. Raut MD, PhD, Mark Fairweather MD, PhD, Elizabeth H. Baldini MD, PhD, Alessandro Gronchi MD, PhD, Laura De Rosa MD, PhD, Anthony M. Griffin MD, PhD, Peter C. Ferguson MD, PhD, Jay Wunder MD, PhD, Michiel A. J. van de Sande MD, PhD, Augustinus D. G. Krol MD, PhD, Jacus Skoczylas MD, PhD, Claudia Sangalli MD, PhD, Silvia Stacchiotti MD, PhD
Cancer: Volume 126, Issue 13
Access here
Management of meningeal solitary fibrous tumors/hemangiopericytoma; surgery alone or surgery plus postoperative radiotherapy?
R. L. Haas , I. Walraven , E. Lecointe-Artzner , W. J. van Houdt , A. N.Scholten , D. Strauss , Y. Schrage , A. J. Hayes , C. P. Raut , M. Fairweather , E.H. Baldini , A. Gronchi , L. De Rosa , A. M. Griffin , P. C. Ferguson , J. Wunder ,M. A. J. van de Sande , A. D. G. Krol , J. Skoczylas , D. Brandsma , F. Doglietto ,C. Sangalli & S. Stacchiotti
Acta Oncologica Volume 60, 2021 - Issue 1
Access here
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
