In 2013 the Euro Ewing Consortium, funded by the European Community’s Seventh Framework Programme started its work on International Clinical Trials to Improve Survival from Ewing Sarcoma. SPAEN is one of the 20 project partners and is involved in the work package focusing on the patient and public involvement.
SPAEN's task is
- to identify a cohort of Euro Ewing patients and/or parents/carers/family members
- to provide training in knowledge and skills which can be applied to supporting the project
- to incorporate PPI activity into all future work of EEC, including dissemination, oversight of activities and strategic priority setting for next generation research
- to ensure rapid, wide and open communication of all aspects of the programme
In Decemeber 2013 the EURO EWING Consortium Kick off meeting took place in London. SPAEN was represented by Ornella Gonazto and Barbara Dore (board members).
For more information please see www.euroewing.eu
Sarcomas are rare malignant tumors, with an overall incidence of 6/105/year. Bone and soft tissue connective tissue tumours encompass more than 50 different rare histotypes and more than 150 different molecular subtypes. The incidence of individual rare sarcomas subtypes is often less than 0.5/105/year. Given the rarity of sarcomas as a group, but even more as individual entities, few prospective clinical trials testing local or systemic treatments have been performed in specific subtypes of sarcomas. Clinical trials in specific histological and molecular subtypes of sarcoma can only be performed through integrated clinical networks, centres of clinical excellence, supported by translational analysis.
The campaign Rare Cancers Europe has been developed by ESMO in collaboration with major European stakeholders in rare cancers and rare diseases to address challenges and propose solutions to eliminate the hurdles that patients with rare cancers, researchers, medical professionals and the pharmaceutical industry working in this field face every day. Rare Cancers Europe (RCE) has been established as a partnership of cooperating organisations that work together to place the issue of rare cancers firmly on the European policy agenda, to identify and promote appropriate solutions and to exchange best practice. SPAEN has now been welcomed into the partnership initiative. http://www.rarecancerseurope.org
SPAEN is closely involved with the European Organisation for Research and Treatment of Cancer (EORTC),particularly in the preparation of clinical studies and the Informed Consent Form (ICF), the progress of the studies, relevant study related publications. and patient information. The EORTC has the mission to develop, conduct, coordinate and stimulate translational and clinical research in Europe to improve the management of cancer and related problems by increasing survival but also patient quality of life.
EORTC is currently conducting A phase III randomized study of preoperative radiotherapy plus surgery versus surgery alone for patients with Retroperitoneal sarcomas (RPS) - STRASS. SPAEN has developed a leaflet/article explaining the STRASS study in non-technical terms with the aim to help patients and carers understand what the study might be able to offer them. This summary is not part of the study information and is not intended to replace any of the study information which is part of the informed consent process.