Research Priorities in Bone Sarcomas

Bone sarcomas are a diverse and hard to treat group of rare cancers. People with bone sarcomas (or primary bone cancer) have high unmet medical needs, and face a range of challenges including delays to diagnosis, disparities in access to treatments and a relative lack of clinical trial and research opportunities.

Take part in the first ever global survey on bone sarcomas - make your voice heard!

About FOSTER 
(Fight OSteosarcoma Through European Research)

This consortium aims at improving outcomes of patients with osteosarcoma. It brings together oncologists, researchers, radiologists, patients, parents and others to work together across 20 countries. More information can be found here.

The patients and parents group in the FOSTER (Fight OSteosarcoma Through European Research) consortium are undertaking the first ever global survey for bone sarcoma patients. We want to know what your experiences have been and where your priorities lie in terms of the research agenda. 

This survey is open to all bone sarcoma patients or survivors (regardless of type), to all carers of bone sarcoma patients and to patient representatives in the field of bone sarcomas. No matter where you live on the globe we would like to hear from and about you!

What is the aim?

This survey will help us to identify where the disparities lie, shine a light on differences between bone sarcoma sub-types and variations across ages.We want to gauge the experiences of patients and parents and help direct attention to those research priorities. 

To the surveys!

It is important to us what you think: Your experience with this disease will help us understand where and which research is needed to make a difference to people’s lives.

Our survey is available in different languages:

  • English
  • Dutch
  • German
  • Spanish
  • Italian
  • French

 

Sarcoma Research Priorities

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: