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Keywords = Sarcoma Patients EuroNet (SPAEN)

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10 pages, 409 KiB  
Perspective
Global Patient Involvement in Sarcoma Care—A Collaborative Initiative of the Connective Tissue Oncology Society (CTOS) & Sarcoma Patients EuroNet (SPAEN)
by Bernd Kasper, Kathrin Schuster, Roger Wilson, Sorrel Bickley, Jean-Yves Blay, Denise Reinke, Markus Wartenberg and Rick Haas
Cancers 2022, 14(4), 854; https://doi.org/10.3390/cancers14040854 - 9 Feb 2022
Cited by 6 | Viewed by 3465
Abstract
Sarcomas are a grouping of rare cancers with a wide variety of histological types that are difficult to diagnose and treat. This leads to many varying challenges not only for sarcoma patients, but also for doctors, researchers, and caregivers. Patient advocacy groups have [...] Read more.
Sarcomas are a grouping of rare cancers with a wide variety of histological types that are difficult to diagnose and treat. This leads to many varying challenges not only for sarcoma patients, but also for doctors, researchers, and caregivers. Patient advocacy groups have an important role to play in rare cancers such as sarcomas, especially in collaboration with experts and their medical societies. To this end, patients and patient advocates from Sarcoma Patients EuroNet (SPAEN), a global network of national Sarcoma Patient Advocacy Groups, and medical experts from the scientifically driven Connective Tissue Oncology Society (CTOS) came together on 9 November 2021 at an official ancillary event to the CTOS 2021 Annual Meeting. At the event, representatives of CTOS and SPAEN jointly discussed gaps and challenges in global sarcoma care and management. This resulting position paper highlights the main findings and possible future steps. Full article
(This article belongs to the Special Issue New Directions for Treating Soft Tissue Sarcomas)
19 pages, 780 KiB  
Review
Unmet Medical Needs and Future Perspectives for Leiomyosarcoma Patients—A Position Paper from the National LeioMyoSarcoma Foundation (NLMSF) and Sarcoma Patients EuroNet (SPAEN)
by Bernd Kasper, Annie Achee, Kathrin Schuster, Roger Wilson, Gerard van Oortmerssen, Rebecca A. Gladdy, Matthew L. Hemming, Paul Huang, Matthew Ingham, Robin L. Jones, Seth M. Pollack, Denise Reinke, Roberta Sanfilippo, Scott M. Schuetze, Neeta Somaiah, Brian A. Van Tine, Breelyn Wilky, Scott Okuno and Jonathan Trent
Cancers 2021, 13(4), 886; https://doi.org/10.3390/cancers13040886 - 20 Feb 2021
Cited by 18 | Viewed by 9975
Abstract
As leiomyosarcoma patients are challenged by the development of metastatic disease, effective systemic therapies are the cornerstone of outcome. However, the overall activity of the currently available conventional systemic treatments and the prognosis of patients with advanced or metastatic disease are still poor, [...] Read more.
As leiomyosarcoma patients are challenged by the development of metastatic disease, effective systemic therapies are the cornerstone of outcome. However, the overall activity of the currently available conventional systemic treatments and the prognosis of patients with advanced or metastatic disease are still poor, making the treatment of this patient group challenging. Therefore, in a joint effort together with patient networks and organizations, namely Sarcoma Patients EuroNet (SPAEN), the international network of sarcoma patients organizations, and the National LeioMyoSarcoma Foundation (NLMSF) in the United States, we aim to summarize state-of-the-art treatments for leiomyosarcoma patients in order to identify knowledge gaps and current unmet needs, thereby guiding the community to design innovative clinical trials and basic research and close these research gaps. This position paper arose from a leiomyosarcoma research meeting in October 2020 hosted by the NLMSF and SPAEN. Full article
(This article belongs to the Special Issue New Directions for Treating Soft Tissue Sarcomas)
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