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Euro Ewing Consortium

The mission of the EURO EWING Consortium (EEC) is to improve all outcomes including duration and quality of survival for people diagnosed with Ewing sarcoma (ES) across Europe. The EEC has developed from its infancy as an informal collaboration between national study groups taking part in joint international trials, to a formal consortium initially funded by the EU under the FP7 scheme. Through this funding the EEC supported two clinical trials that have changed practice - Euro Ewing 2012 and rEECur. Thanks to support from UK charities (Bone Cancer Research Trust, Ewing’s Sarcoma Research Trust and the Ambalo family) the EEC has been able to continue its work after the European Union grant ended in November 2019. The EEC network extends across the world and has over 140 active members from 25 countries and a further 120 experts represented in the wider ES community. Collaboration is key to increasing survival and quality of life for patients with this rare cancer and the EEC plays a vital role in this.

What does the EEC do?

Consultation and implementation
The EEC Executive Committee consults with the wider EEC network at meetings and through emails and surveys. These consultations inform the priorities and programme of activities for the EEC.

Collaboration
The EEC brings together ES experts to collaborate on trials, biological research, funding calls and to overcome challenges. The collaboration extends across countries and continents and has included joint applications for EU grants, partnership with the USA-based Harmonization International Bone Sarcoma Consortium (HIBiSCus) and joint meetings with osteosarcoma researchers through the European Bone Sarcoma Network. The EEC has recently established working groups for local therapy. The priorities for both the EEC Surgery Working Group and the EEC Radiation Oncology Group aligned and aim to harmonise surgical/ radiotherapy guidelines for ES patients in Europe, to harmonise the surgical/ radiotherapy data collected by prospective ES trials and to propose questions on outcomes of surgery and radiotherapy. A group focussing on early phase clinical trials will be established in 2022.

Networking
The EEC acts as a hub, connecting international organisations, trial groups and charities to make sure that the communication and networking that is essential to the success of the Consortium is developed and maintained. 

Patient advocacy
Patient advocates (PAs) are fully involved at the strategic level with membership on the EEC Executive Committee, the EEC Local Therapy Working Groups and the Trial Steering Committee for the Euro Ewing 2012 and rEECur trials.

Improving outcomes in ES
Clinical trials are essential to ensure that survival and quality of life is improved for ES patients. The EEC continues to support the clinical and biological research from the EU-funded programme which funded the Euro Ewing 2012 and rEECur trials. The EEC facilitates biological research, engages with pharmaceutical and biotech companies and has been successful in accessing novel agents for both rEECur and the INTER-EWING-1 and iEuroEwing trials that will open soon. A current focus for the EEC is to enable access to data the previous international ES trial, EE99 and to facilitate the combined analysis of data from the Ewing2008 and Euro Ewing 2012 trials through sourcing funding and coordinating agreements.

EEC strategy and priorities

The EEC Executive has approved the following strategy to direct the work of the EEC over the next three years (EEC strategy 2021 (pdf)).

The priorities for the EEC are: 

  1. Harmonisation
  2. Better treatments
  3. Support global efforts – collaboration will benefit European patients and worldwide patients
  4. Funding

EEC Newsletter - May 2022

The fifth newsletter of the new era of the EEC can be viewed here.

Thank you to those that attended the EEC Network meeting on Tuesday 25 January. Presentations and recordings will be added here as they are uploaded. Please check to see if the page has been updated.

Future EEC meetings

The next EEC network meeting will be a virtual event on Tuesday 31 January 2023 followed by a face-to-face meeting in London on Monday and Tuesday 26 and 27 June 2023. We look forward to seeing you all again.

The EEC local therapy working groups (Surgery and Radiation Oncology) will meet in person on Wednesday 19 October 2022 at the EMSOS conference in London. Registration is now open.

News

rEECur presentation is a success at ASCO 2022

Martin McCabe (University of Manchester) CI for the rEECur trial presented the latest rEECur data at the plenary session at ASCO on 5 June 2022.

Vicki L. Keedy, MD, MSc, ASCO sarcoma expert, said that the data was "potentially practice-changing".

Read all about it in The ASCO Post article, 'Study Finds High-Dose Ifosfamide Superior to Other Standard-of-Care Treatments in Recurrent and Primary Refractory Ewing Sarcomas'

The EEC has been awarded funding for a further year

We are very grateful to the Bone Cancer Research Trust and Ewing's Sarcoma Research Trust for jointly supporting the EEC for a further year from December 2021. This will be the third year of support from The Ewing's Sarcoma Research Trust and the first year of funding from Bone Cancer Research Trust. The EEC does not receive funding from national organisations and is dependent on the support of fantastic charities like this to help us to continue with our mission to improve survival from Ewing sarcoma.

EEC PA is an author on a Ewing sarcoma publication

Yasmin Uhlenbruch, EEC patient advocate and member of the EEC Executive has contributed to a review of Ewing sarcoma by Stefan Zöllner and colleagues. The EEC is very encouraged to see this level of active involvement of patient advocates in research and dissemination. The paper, 'Ewing Sarcoma—Diagnosis, Treatment, Clinical Challenges and Future Perspectives' was published in the Journal of Clinical Medicine.

Another step closer to liquid biopsies for ES patients

Eleni Tomazou and colleagues have shown that sequencing of cell-free DNA from liquid biopsies of ES patients is feasible and can be used for the detection, classification and monitoring of disease. This study was part-funded by the EEC EU FP7 grant and the paper 'Multimodal analysis of cell-free DNA whole-genome sequencing for pediatric cancers with low mutational burden' was published in Nature Communications.

Watch our films on the EURO EWING Consortium here. Thanks to all those members of the ES community who took part.

Patient advocacy has been a large part of the EEC project since 2013 and here are some of our current patient advocates talking about how they have contributed to our research. Watch the video here.

The EEC supported the Euro Ewing 2012 trial (now closed) and the rEECur trial (ongoing). Learn more about the EE2012 and rEECur trials by watching these films made by the EEC.

 

 

EEC membership

Membership is open to those in Europe and outside of Europe who are active in ES research/ treatment or patient advocacy. Before applying, you must have attended at least one EEC meeting. To apply for membership of the EEC, please complete the online form, and send your CV and two nominations from current EEC members to eec@ucl.ac.uk.

ASCO 2021

The American Society of Clinical Oncology (ASCO) conference was held virtually during 4 - 8 June 2021.

A downloadable version of the 2021 ASCO Annual Meeting Proceedings is now available and the abstracts for the sarcoma talks can be found here - ASCO sarcoma abstracts (pdf).

Links to abstracts and conclusions specific to Ewing sarcoma can be found here - ASCO Ewing sarcoma abstracts.

Recent meetings

  •  SIOP Europe Annual Meeting -  21 - 25 March 2022, Madrid, Spain (and also virtual)
    • EEC session (Thursday 24 March, 10:30 - 12:15 CET)