Our goal in the EURO EWING Consortium (EEC) is
to improve treatment outcomes for patients with Ewing
sarcoma (ES) through a new and unique level of European collaboration.
programme has two clinical trials at its centre that test different
chemotherapy treatments for this rare disease.
These clinical studies are
underpinned by collection and analysis of tissue samples from patients in the
clinical trials to allow investigation of related biology on an unprecedented
The EEC also recognises that public and patient involvement (PPI) in bone sarcoma clinical research is not well evolved, mostly reflecting the rarity and heterogeneity of these diseases. We have therefore dedicated resources to develop and support new PPI relationships.
Ewing sarcoma is a primary bone cancer with a peak incidence in young people, with 85% of cases occurring before 30 years. Approximately 600 new cases of ES are diagnosed in the European Union every year, of whom less than 30% are thought to have been included in clinical trials at diagnosis. The most common presentation is with pain and swelling of an affected bone, most commonly the femur, but over 50% of primary tumours affect the pelvis and axial skeleton. Spread of the cancer is most commonly to the lungs, other bones and to bone marrow, occurring in up to one-third of patients. Diagnosis, often after a long period of unrecognised symptoms, is made by biopsy and confirmed by detection of a characteristic genetic abnormality, or chromosomal translocation, most often at t(11;22)(q24.q12). Treatment is with intensive multiagent chemotherapy as well as management aimed at the primary tumour site, using surgery, radiotherapy or both. Survival from national population data is around 55% (UK data, 95% CI 49-60) though survival of selected groups reported in clinical trials may be considerably better, while in those presenting with advanced metastatic disease, long term survival is achieved in only a very small proportion.
The EEC represents a culmination of effort by several study groups who now embark on wider and more ambitious collaboration to enable:
- More rapid completion of larger, more reliable trials
- Greater accessibility of patients to trials
- More efficient acquisition and sharing of knowledge and translation into routine care
- More efficient resource use
- A focus of specialist expertise for cooperation with pharma in the development and evaluation of new treatments.
- More effective working with global partners
Specifically, the EEC programme aims to improve outcome through the following objectives:
- To undertake an investigator-initiated first line randomised trial in patients of all ages with ES which defines standards of care for adjuvant chemotherapy to prevent development of metastases and increase survival (Work Package 1)
- To undertake an investigator-initiated randomised trial of current second line chemotherapy in patients of all ages with ES which establishes a standard and will serve as a platform for testing of new agents (Work Package 2)
- To undertake comprehensive translational and other companion studies which investigate underlying causes of differential response and toxicity, as well as circulating biomarkers in conjunction with systemic treatments (Work Package 3 and Work Package 4).
- To disseminate all emerging findings in conjunction with EEC partners and external agencies and to use these for development of further strategies to improve knowledge and outcomes from ES (Work Package 5)
- To introduce public and patient involvement into the work of EEC (Work Package 5).