Patient and Public Involvement in the EURO EWING Consortium

The EURO EWING Consortium (EEC) is very grateful to the patient experts that have generously given their time to support the work of the EEC so far. At the moment we have patient experts representing the UK, Italy, France, Germany, Ireland and Norway and we hope that with time we will have patient and public involvement from more countries.

So far the patient experts have:

• reviewed and commented on patient information sheets.
• influenced the protocol design for the rEECur trial.
• been involved in a prioritisation exercise on patient and public involvement activity.
• joined discussions on future trials for a specific group of Ewing sarcoma patients that have a poor prognosis.
• given input into how patient experts can help to improve bio-banking.
• represented patients and carers at international meetings and written meeting reports.
• given input on web pages, aimed at patients and carers, that will update trial participants on progress.
• publicised the EEC and patient and public involvement in the EEC to parents and carers.