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 140 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. Two further groups will be established in late 2023, the first focussing on early phase clinical trials and the second on biological research.

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, NEWTS Group and the Trial Steering Committee for the Euro Ewing 2012 and rEECur trials.

If you would like to join the EEC as a patient advocate, please complete this form and find out more in this flyer.

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 recently opened. 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:

Harmonisation
Better treatments
Support global efforts – collaboration will benefit European patients and worldwide patients
Funding

EEC Newsletter - February

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

Future EEC meetings

The next EEC network meeting will be face-to-face in central London on Monday 24 and Tuesday 25 June 2024. Information on how to register will be advertised here in April.

Day 1 will focus on the planning for the next international ES trial and day 2 will include trial updates, EEC progress and a focus on biomarkers as well as presentations from Early Career Researchers.

News

Paper published on Ewing 2008 trial shows that patients with poor responses to chemotherapy benefit from radiotherapy added to surgery

Philip Heesen et al., European Journal of Cancer, Volume 192, October 2023, doi:10.1016

EEC awarded funding by Bone Cancer Research Trust

The EEC is extremely grateful to the Bone Cancer Research Trust (BCRT) who have awarded funding to the EEC until March 2026, dependent on meeting annual deliverables.

This funding will enable to the EEC to continue to support and facilitate collaboration to improve survival for patients with Ewing sarcoma.

Save the date for Scandinavian Sarcoma Group 41st congress & 13th meeting of Nurses & Physiotherapists Group
May 22-24, 2024, in Gothenburg, Sweden

This is an open meeting and the invitation is open those working in the field of sarcoma outside of Scandinavia. More information: http://www.ssg-org.net/

Contact details: Lina.Hansson@vgregion.se and Eva-Mari.Olofsson@med.lu.se

rEECur trial adds new agent arm

The rEECur clinical trial has added a new arm to see whether Lenvantinib plus chemotherapy is more effective than chemotherapy alone. The additional funding has been awarded by the Bone Cancer Research Trust.

Martin McCabe is interviewed for This Week in Paediatric Oncology

Martin McCabe (UK), lead for the rEECur trial was interviewed by Dr Timothy Cripe for This Week in Paediatric Oncology and talks about rEECur. You can watch it on YouTube or listen to the podcast.

EEC Patient Advocate Group members publish paper in The Journal of Cancer Policy

Ornella Gonzato (Italy) and Kathrin Schuster (Germany), both members of the EEC Patient Advocacy Group and SPAGN have written and published a paper on patient advocacy in musculoskeletal sarcoma. "The role of patient advocates and sarcoma community initiatives in musculoskeletal oncology. Moving towards Evidence-Based Advocacy to empower Evidence-Based Medicine" is available for free for a limited time. This paper will provide a useful resource for those working in patient advocacy.

Euro Ewing 2012 clinical trial results are published in the Lancet Journal

The results of the practice-changing clinical trial for patients with newly-diagnosed Ewing sarcoma have been published in the Lancet journal. Free access to the full article will be available for a limited time, and for patients and the public, a plain English summary, reviewed and edited by the EEC patient advocates can be viewed here and an Italian translation, translated by one of the EEC patient advocates can be found here. The EEC would like to thank all the patients and researchers for their contribution to this important trial.

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

EMSOS 2022, London