The Euro Ewing Consortium group, who meet twice a year, aim to increase the number of patients with access to clinical trials while sharing their knowledge on an international level. The most recent EEC meeting was held in London last month, and we were pleased to attend to hear about the latest work in Ewing sarcoma.

What is the Euro Ewing Consortium?

The EURO EWING Consortium (referred to as the EEC) is a collaborative project co-ordinated by University College London. This project involves 20 dedicated partners from around Europe who work together to improve survival rates for Ewing sarcoma patients and develop further treatment options. The EEC brings together the most active clinicians and scientists working in Ewing sarcoma to support the design, organisation and analysis of clinical trials for patients while carrying out complementary research to bring new drugs into these trials.

What were the highlights of the meeting?

The 2 day meeting began with an interactive workshop ran by external advisors to the EEC group; Professor Mahesh Parmar (Director of The Institute of Clinical Trials and Methodology) and Professor David Thomas (The Kinghorn Cancer Centre, Sydney). Those attending the meeting were challenged with the collaborative task of ‘Developing a Strategy for Future European Collaboration in Ewing Sarcoma Clinical Research’.

Of the many ideas shared and agreed on, topics such as pushing forward for increased political awareness of rare tumour research, empowering patients to have more impact and input into health care decisions and continuing to increase the collaboration of researchers to share their expertise and samples to drive forward research advances were all highlighted.

Throughout the 2 day meeting attendees heard exciting updates from both researchers carrying out work in Ewing sarcoma and clinicians leading clinical trials in the field (such as Euro-Ewing’s 2012 and rEECur), during sessions chaired by Professor Jeremy Whelan and Dr Sandra Strauss. Furthermore, Professor Mahesh Parmar shared his knowledge on clinical trials and encouraged advice sharing regarding how to add further value to these trials in order to gain as much knowledge as possible while working with a smaller group of patients. Professor David Thomas also presented some very exciting results that are starting to come out of the ‘International Sarcoma Kindred Study’, which could help to stratify bone sarcoma patients according to their genetic profile.

How can you get involved?

One of the aims of the EEC is to bring patient and public involvement activity into the work of the group in order to share information, oversee research activities, comment on clinical trial protocol designs and represent patients at these international meetings.

The EURO EWING Consortium (EEC) meeting was closed by a short talk from patient advocates that attend these meetings to provide their views and feedback on the meeting and current work of the EEC. Furthermore, during this meeting, BCRT attended the first Patient/Carer NEMDT Advisory Group led by Dr Jessica Bate to discuss how to improve the treatment planning process for Ewing sarcoma patients while sharing their experiences and views.

Please get in touch if you would like to be involved in future meetings and share your experience of Ewing sarcoma during these international meetings as a patient representative.