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Consultation on a strategy for future European cooperation in Ewing sarcoma clinical research
Clinicans, scientists, healthcare professionals, researchers, patients and carers involved or affected by Ewing sarcoma - please help us to shape the new era of the EURO EWING Consortium by giving your feedback on the 
proposals (or copy and paste the table below) and emailing them to us by the end of the day on Monday 27 January 2020. Comments, feedback and suggestions will be discussed at the EEC meeting on Thursday 30 January 2020. Thank you for your support!
| Proposed wording for EEC Constitution/Terms of Reference | Your response. Please state if you agree or if you would propose changes, and why |
The aim of the EEC | To improve all outcomes including duration and quality of survival for people diagnosed with Ewing sarcoma in Europe |
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The purpose of the EEC | The Consortium will be responsible for development and maintenance of a strategy to optimise collaborative efforts by a network of clinicians, scientists and patient advocates working to achieve the aim of the Consortium |
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The Objectives of the EEC | To promote clinical trials for patients with Ewing sarcoma |
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| To facilitate participation in clinical trials by improving availability |
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| To promote translational research in Ewing sarcoma |
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| To develop new treatments for Ewing sarcoma |
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| To encourage new clinicians, investigators, patient advocates and other stakeholders to engage with EEC activities |
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| To develop relationships in support of the EEC aim with partners including investigators, funders, regulatory bodies, industry |
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Membership of the EEC | The EEC will have a defined membership aiming to provide representation for all European countries |
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| Membership will be through organisation rather than individual except for patient advocates |
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| Organisations may include professional societies or research organisations |
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| Organisations will provide a named representative |
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| Entry to the EEC will be considered by the Executive and approved by a majority of the EEC Council |
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The governance of the EEC | The EEC will nominate an Executive consisting of six representatives including different national, professional and experience perspectives and at least one patient advocate |
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| The Executive will nominate a Chair each year. |
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| The Executive will be responsible for ensuring the strategy of the EEC is being followed to meet the aim and objectives |
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| The Executive will be supported by a project manager |
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| The Executive will communicate and consult with all other EEC members (‘The Council’) |
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| The Council will convene at least once per year to consider a report from the Executive and to consider EEC progress and activity |
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Funding of EEC activity | The EEC will, through the Executive, seek ways to financially support and sustain the EEC |
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| The costs of participation in activities will generally be borne by the members |
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The future activities of the EEC | The EEC will organise meetings at least twice per year for members to address the objectives. |
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| Please add your suggestions for future activities with a proposal of how they could be supported. |
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