Sarcoma Policy Checklist

Despite advances in research and treatment in recent years, sarcoma patients report some of the poorest experiences of care among people with cancer. 

Sarcoma Policy Checklist

Despite advances in research and treatment in recent years, sarcoma patients report some of the poorest experiences of care among people with cancer. 

Context

Sarcoma is a family of rare cancers that develop in the connective tissues.

There are more than 70 types of sarcoma, and it can occur anywhere in the body. As a result, it is often difficult for healthcare professionals to gain specialist training in sarcoma, or for patients to find sufficient information about their condition. People with sarcoma have some of the poorest outcomes of all cancers, and there are significant inequalities in access to and quality of treatment across Europe.  

To improve outcomes for people with sarcoma, policymakers should prioritise designated and accredited centres of reference, greater professional training, a multidisciplinary approach, greater incentives for research and innovation, and more rapid access to effective treatments. 

%

Up to 40% of sarcoma patients receive an incorrect diagnosis

%

Sarcoma accounts for 1% of all cancers

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...but 2% of all cancer deaths

What we achieved

HPP assembled an expert group of leading patient, clinical and industry representatives from across Europe to develop the Sarcoma Policy Checklist, setting out key priorities for policymakers. Six country profiles illustrate the extent to which these priorities are implemented in France, Germany, Italy, Spain, Sweden and the UK.

The report and accompanying infographic are available in five languages.

We launched the report in February 2017 at a European Parliament policy debate hosted by Marlene Mizzi MEP.

In 2018, the report was developed into a peer-reviewed paper published in BMC Cancer.

‘The Sarcoma Policy Checklist report has been a very useful document for me as a sarcoma expert. The team at HPP provided a highly professional coordination of all aspects of the project; they were a pleasure to work with. The fact that the report was published as a peer-reviewed publication is a true testament to the quality of the work done.’

Bernd Kasper

Member of the Sarcoma Policy Checklist expert group

Key partners and stakeholders

Members of the expert group include:

  • Paolo Casali, Istituto Nazionale Tumori, Italy
  • Nora Drove, Eli Lilly & company
  • Sarah Dumont, Institut Gustave Roussy, France
  • Mikael Eriksson, University of Lund, Sweden
  • Alessandro Gronchi, Istituto Nazionale dei Tumori, Italy and EORTC Soft Tissue and Bone Sarcoma
  • Bernd Kasper, University of Heidelberg, Germany
  • Estelle Lecointe, Info Sarcomes, France and SPAEN
  • Claudia Valverde, University Hospital Vall’ Hebron, Spain
  • Markus Wartenberg, SPAEN & das Lebenshaus e.V., das Wissenhaus GmbH, Germany
  • Roger Wilson, SPAEN

The report was endorsed by:

  • Sarcoma Patients EuroNet (SPAEN)
  • Info Sarcomes (France)

The project was initiated and funded by Lilly.