The Sarcoma Research Priorities Paper
We want to know what needs to be improved about the diagnosis, treatment and care of people living with or beyond sarcomas (all subtypes) – and we need your help to do this (please see our survey below)!
We want to define the top 10-20 most important questions for sarcoma research - and thus set the right priorities in sarcoma research for patients. This also includes gastrointestinal stromal tumours (GIST) and demoid tumours (aggressive fibromatosis).
We have therefore kicked off a project in cooperation with Dr. Olga Husson and Prof. Winette van der Graaf from the "Netherlands Cancer Center" in Amsterdam, The Netherlands, supported by the European Organisation for Research and Treatment of Cancer (EORTC) Soft Tissue and Bone Sarcoma Group (STBSG).
Our questionnaire: Your opinion matters!
As first step, we've created a questionnaire for anyone to answer who's been touched by sarcoma - patients, carers, family members, friends of sarcoma patients, but also healthcare professionals (doctors, researchers, nurses etc).
So, if you ever had a question about the diagnosis, treatment, survivorship or end-of-life care of sarcoma and have not been able to find out the answer, of if there any aspects of sarcoma which you feel should be addressed by research, then please take part in this survey (see links below!).
No matter in which way you are touched or associated with sarcoma, GIST or desmoid tumours – your opinion matters!
How will we proceed?
This questionnaire will be phase I of the project. First findings will be presented at our SPAEN Annual Conference early February 2019.
Phase II will encompass a consensus meeting of patients and healthcare professionals and a second questionnaire with an (extensive) list of questions for sarcoma research to be prioritized – this questionnaire again is intended to be available online for everybody to answer. We will keep you posted!
Help us to influence sarcoma research for a better outcome for patients!
It is important to us what you think! We want to use your questions to help set priorities for research. This means: Your experience with this disease will help us understand where research is needed that will make a difference to people’s lives.
Please help us improve the situation for sarcoma patients!
The surveys - let's go!
Our survey is available in different languages and for two different audiences: