by Amy Bruno-Lindner, SPAGN Volunteer and Editor-in-Chief of Voices of Sarcoma.
As the oncology community prepares to gather for the annual conference of the Connective Tissue Oncology Society (CTOS) in Dublin from November 1-4, the spotlight falls on sarcomas. The motto of this year’s conference is “Global Outreach, Global Impact”. This pivotal event brings together oncologists, researchers, and patient advocates, all dedicated to the common goal of advancing the understanding and treatment of these rare cancers.
CTOS is a global organization comprised of oncologists and scientists with a primary interest in the tumors of connective tissues. In the words of Roger Wilson, Honorary President of the Sarcoma Patients Advocacy Group Network (SPAGN), "CTOS is the forum for worldwide sarcoma research. It is also the forum for clinical leadership.”
SPAGN and its members will have a prominent presence at the upcoming conference in Dublin. The Patient Advocacy Lounge will serve as a venue for showcasing the work of advocacy organizations, with posters on display throughout the duration of the conference.
It will also be a place for the sarcoma community to meet, so just drop by whenever you want to exchange with others. And, don’t miss Roger Wilson’s presentation on sarcoma specialist centers at 9:00 a.m. on November 2, and the Patient Advocacy Reception in our Advocacy Lounge at 5 p.m. that same evening!
Beyond SPAGN’s participation in the conference, what is it that makes the collaboration between CTOS and SPAGN so important? What are the potential benefits? We talked to a few members of SPAGN’s Board of Directors about these questions.
A United Front: CTOS and SPAGN
As the only two sarcoma-specific organizations with a global reach, CTOS and SPAGN decided to join forces in 2022. This partnership is a milestone in the ongoing global effort to improve outcomes for patients with these rare cancers.
Kathrin Schuster, Executive Director of SPAGN, explains why: “In rare diseases like sarcoma, it is essential that all stakeholders work together to address the challenges sarcoma patients are facing. Partners can gain strength from finding common ground, sharing resources and working together, which they cannot do working apart or in competition with each other.“
Dr. Bernd Kasper, a medical oncologist active in both CTOS and SPAGN, sees the partnership between the two organizations as a logical step forward: “There are so many challenges in sarcoma management that we experts and patient advocates share. Joining forces is the right way and the only way to address them.”
For Gerard van Oortmerssen, Co-Chair of the SPAGN Board, the significance is clear: "The CTOS - SPAGN collaboration is important because specialists and patients now join forces and support each other."
SPAGN’s Vision: A Cultural Shift
SPAGN is dedicated to making the patient voice heard and to ensuring that patient expertise is included in sarcoma research. We believe that a cultural shift is needed to make this happen. It is in this sense that the CTOS-SPAGN collaboration will bring about real benefits.
Denise Reinke, Research Director at the University of Michigan and a healthcare professional herself, points to the benefits of patient involvement in sarcoma research: “SPAGN can bring the collective as well as the individual national voice of the sarcoma patient or advocate to the researchers and clinicians as they plan sarcoma research.“
More specifically, patients can help shape research priorities so that they include patient priorities; patients can also help identify hurdles to participation in clinical studies from a patient perspective.
What’s more, Denise adds, "The patient voice can help identify missing inclusion/exclusion criteria for proposed research, identify patient report outcome measurements that can enhance and strengthen research, aid in making the patient community aware of research initiatives that they can participate in, as well as aid in developing reports of completed research in language that patients can understand."
A Collaboration with Global Impact
Markus Wartenberg, Chair of the SPAGN Board of Directors, is hopeful that the CTOS/SPAGN collaboration will extend beyond this yearly event, serving as a basis for more initiatives, collaborations and working groups going forward.
The common aim is to ensure early diagnosis, accessible treatment, better dissemination of information, and support for sarcoma patients all over the globe.
For this, it is essential that patients become partners, not just participants in the research, Markus emphasizes.
”At the end of the day,“ says Markus, “it’s about what we can do together to improve the lives of more sarcoma patients worldwide.“