The SPAEN Sarcoma Research Group
Research in sarcomas needs to become more patient-centric!
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We feel that research decision making sometimes depend on other reasons than actual needs and most important questions for patients. Therefore, we would like to work towards developing a strategy and clear direction to ultimately improve outcomes for sarcoma patients – in a collaborative effort of patient advocates, patients, carers and sarcoma experts.
We have therefore created a patient-led research group of patient advocates, a project leader and a medical advisor:
 Richard DavidsonSarcoma UK UK |
“If we are to significantly improve sarcoma patients’ outcomes and experience, we need to ensure that they are central to decision-making when it comes to informing, designing and developing research programmes and projects. Personal experiences of sarcoma are essential to improved understanding and knowledge.” |
 Natalia FernandezAEAS Spain |
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 Phil GreenBone Cancer Research Trust UK |
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 Gerard van OortmerssenPatientenplatform Sarcomen The Netherlands |
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 Kai Pilgermann Deutsche Sarkom-Stiftung/German Sarcoma Foundation Germany |
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 Lotta VådeSarkomer Norway Norway |
“Involving patients in research will give the studies an extra, and very important, perspective. The experience the patients and their relatives have is valuable and can not be found elsewhere. I also belive that including patients will bring up new areas that should be investigated. A collaboration between the medical expertise and the people who has the personal experience will be the best team!” |
 Roger WilsonSarcoma UK/SPAEN Honorary President UK |
“Giving the patient a voice in the design and development of cancer research recognises that the lived experience of treatment brings knowledge and creates challenges to which researchers do not otherwise have access. The result is better research, which may be delivered more quickly because the questions being answered are seen as relevant by patients. The culture of research also changes as patients are recognised as partners bringing value, often in hidden ways, to the process and the projects.” |
Project lead:
Kathrin Schuster
Deutsche Sarkom-Stiftung/German Sarcoma Foundation/SPAEN
Germany
Support and input:
Prof. Bernd Kasper
Medical oncologist, Mannheim, Germany
| Read more about our first project “The Sarcoma Research Priorities Paper”coma Research Priorities Paper”: We want to know what needs to be improved about the diagnosis, treatment and care of people living with or beyond sarcoma (incl. GIST and desmoids) – and we need your help to do this! |