Christopher Copland, consumer representative
“Are you a patient or survivor of Ewing’s Sarcoma or one of their carers?” and/or “Would you like to make your voice heard on a major European initiative?” Read more about the Euro-Ewing’s Consortium
The Euro-Ewing’s Consortium was recently launched as a pan-European programme to improve survival for those with Ewing’s Sarcoma. This Consortium is made up of scientists and practising doctors and its members are seeking patients and carers to join a network which will influence how the project moves forward. If you think this might be for you or may be of interest to others you know – read on.
What is Ewing’s Sarcoma?
Ewing’s Sarcoma is a form of bone cancer that principally affects young teenagers, though adults and children can also develop the illness. One factor it holds in common with many young people’s cancers is its disappointing survival rate. The Bone Cancer Research Trust reports that: The overall 5-year survival rate for Ewing’s sarcoma is now around 60 %…Although survival has dramatically increased compared to the 1970s since chemotherapy has been used, it has only slightly improved over the last 20 years. (BCRT, 2015)
Ewing’s is one of a significant group of young people’s cancers that have remained on a kind of ‘plateau’ for decades, during which there have been no significant improvements in survival rates.
What is the Euro Ewing’s Consortium?
This is an independent initiative funded by the European Union. It is conducting two research trials:
- Euro Ewing’s 2012 with patients at the primary stage of the illness
This compares chemotherapy combinations to determine which are more effective and which have fewer side effects.
- rEECur with patients at relapse
This tests the effectiveness of different chemotherapy agents in order to establish a ‘backbone’ against which to compare new therapies. The Consortium also develops biomarkers, which can help diagnose and monitor the illness, and it collects tissue samples for research.
Why is the project European-wide?
With rare illnesses, it is necessary to recruit beyond national boundaries in order to find sufficient participants for research evidence to be reliable. It is intended that these trials will roll out in seventeen countries and recruit a thousand participants in the coming five years.
What can Euro Ewing’s achieve?
Although the trials being conducted are large scale, their ambition is modest in terms of expected improvement. They do not include new biological agents and there is no expectation that the therapies being tested can lift Ewing’s off the’ plateau.’ However, now the two Ewing’s trials are up and running, there is the potential for incorporating new agents into the trials and extending their scope.
What will patient / carer input involve?
Through online communication or perhaps face to face meetings, there will be the opportunity for patients and carers to participate in a dialogue about how EEC should evolve. It is hoped that a European wide network can be created through SPAEN (Sarcoma Patients Euronet) and that this will not only influence the direction of research into Ewing’s but also provide support to families.
Are you Interested?
Chris Copland is a parent representative on the Trial Steering Committee for Euro Ewing’s. He is also a consumer representative at the National Cancer Research Institute in the UK.
BCRT (2015) How Many People and Which Age Groups are Affected by Ewing’s Sarcoma? Retrieved from:http://www.bcrt.org.uk/bci_how_many_people_and_which_age_groups_are_affected_by_ewings_sarcoma.php