Information for Patients and the Public

Early phase clinical trials for Ewing sarcoma

EEC Early Phase Clinical Trials List 30 July 2025.pdf

The list of early phase clinical trials has been provided by members of the EEC, and there may be other trials that we are not aware of. By listing these trials, the EEC and UCL are not endorsing or recommending participation in, or referral to, these trials, and they are unable to take responsibility for how the information in the trials list is used.

This list will be updated at least twice a year. The latest version of the list was updated on 30/07/25.

If you are a patient, please ask your clinician to contact the chief investigator of the trial to find out whether you are eligible to take part and whether there would be any costs involved.

Patient advocacy

The EEC value and encourage patient advocacy across all areas of the Consortium and have pioneered and are leaders in the involvement of patient advocates in Ewing sarcoma research. Involving and consulting with patient advocates has become a reflexive action for researchers in the EEC community. They automatically request the input and perspective of patient advocates and this interaction has been developed over more than ten years of investment into this important activity.

What do we mean by 'patient/public involvement'?

Patient advocacy or patient and public involvement (PPI) are terms used in the UK medical research community. In other countries, the term 'patient expert' is sometimes used. Patient advocacy is the involvement in and the engagement with patients and carers with research, whereas patients who take part in a clinical trial are called 'participants'.

Who are the EEC patient advocates?

The EEC patient advocates are currently all adults (but we would encourage the involvement of children and teenagers), some who are/ were patients and some who are/were carers, who meet via Zoom and discuss by email and Google Groups. They represent Spain, the UK, Norway, Greece, Germany, Bulgaria, Slovakia, Poland, the Netherlands, Hungary and Italy. Many of the patient advocates are from the UK because of the strong history of patient and public involvement and because the language of science is English. We strive to have representation from all countries in Europe and would encourage people to join the patient advocacy group.

What can the EEC offer to patient advocates?

• The opportunity to take part in clinical trial design, shape Ewing sarcoma research and meet with other patient advocates as well as international Ewing sarcoma experts.
• Honorariums in return for time contributed.
• Four online themed meetings per year.
• Clinical or scientific mentors.

How are patient experts involved?

• Influencing the strategy and direction of the EEC  through membership of the Executive Committee and working groups
• Sharing information about the EEC with the ES community
• Presenting at EEC network meetings and other meetings and conferences
• Input into trial design
• Input into grant applications
• Review of patient information for clinical trials

Examples of how the EEC patient advocates have contributed to EEC activities:

• Regular presentation slot at EEC Network meetings
• Contributed to many grant applications
• Named collaborators on EEC grant from Bone Cancer Research Trust
• Carried out surveys using social media on priorities for research and experience of surgery
• Presented posters and given presentations at conferences/ meetings
• Changes to trial protocols to make them more patient-friendly
• In response to patient advocate input, changes have been made to trial protocols to make them more patient-friendly
• Patient advocates joined with clinicians to meet with a pharmaceutical company and had a positive impact on access to a drug for the rEECur clinical trial
• Making their experience relatable to laboratory scientists which had been motivating and inspiring
• Reviewed lay summaries
• Working with scientists to improve mechanisms for obtaining consent and for the use of blood and tissue samples from patients
• Giving a PhD student the patient/ carer perspective on aspects of statistical analysis within their project
• Giving the statisticians the patient/ carer perspective on what level of risk/ benefit should be considered when testing a specific drug in the rEECur trial
• Involved in drafting the EEC NEWTS Group strategy and designing the online list of early phase clinical trials for ES in Europe

Collaboration

The EEC is a founder member of the Bone Sarcoma Alliance and works closely with SPAGN. The EEC is looking forward to collaborating with the Ewing Sarcoma Institute and working together on projects that will benefit patients globally.

Early phase clinical trials list

The EEC NEWTS group is responsible for maintaining a list of early phase clinical trials for ES in Europe that are open to recruitment or about to open. This list will be updated at least twice a year. If you are aware of a trial that is not listed below, please contact the EEC, and the trial will be added during the next update. This version of the list was updated on 30/07/25.

EEC Early Phase Clinical Trials List 30 July 2025.pdf

The list of early phase clinical trials has been provided by members of the EEC, and there may be other trials that we are not aware of. By listing these trials, the EEC and UCL is not endorsing or recommending participation in, or referral onto, these trials, and they are unable to take responsibility for how the information in the trials list is used.

If you are a patient, please ask your clinician to contact the chief investigator of the trial to find out whether you are eligible to take part and whether there would be any costs involved.

How can you become a patient advocate?