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Join "Integrated Analysis of Tumour Genomics Data with R2" Training Activity, 28 May, Amsterdam On behalf of ENCCA Work Package 5 (Biology to guide innovative targeted therapy development), we are pleased to announce the second ENCCA training activity for the "Integrated Analysis of Tumour Genomics Data with R2" on 28 May, 2013. The workshop is organised by the Department of Oncogenomics at the Academisch Medisch Centrum Amsterdam. For more information, click here. 17 April 2013 The Survivorship Passport: an innovative solution for follow-up An outstanding achievement of ENCCA has been the partnership between professionals, survivors and IT experts to create a “Survivorship Passport”. As 80% of young people with cancer are now surviving, it is essential that health systems are able to deal with this ever-impressing figure by informing all relevant stakeholders on possible risks or late effects of the cancer treatment received. You can read an interesting update on the passport here. 19 March 2013 Standards of Care for Children with Cancer: now in 15 languages! The dissemination of the Standards of Care is making fast progresses: having it today already available in 15 languages makes this important document easily accessible in most European hospitals, clinics, health centres and families in Europe. The 'European Standards of Care for Children with Cancer' is a consensus document - agreed by patient and parent groups and professionals - defining the minimum standards institutions should have when caring for young cancer patients. Launched in October 2011 at a high-level meeting in Warsaw in the framework of the EPAAC project - in collaboration with SIOPE, the Polish Ministry of Health and the "Communication without Barriers Foundation" - the European Standards of Care for Children with Cancer address topics like components of care in a specialist facility, the delivery of therapy and the rights of the hospitalised child. The main aim of the project is to address the main inequalities in paediatric cancer care and treatment across our continent. You can download them here in English, Czech, Greek, Italian, Latvian, Lithuanian, Polish, Portuguese, Romanian, Serbian, Slovak, Slovenian, Spanish, Russian and Ukrainian. 4 March 2013 New Lancet Oncology Series highlights unmet needs of children and young people with cancer and challenges public policy on childhood cancer The outstanding oncology journal, The Lancet Oncology, has published a new Series of articles dedicated to paediatric oncology. Thanks to the efforts of several SIOPE and ENCCA partners (including Kathy Pritchard-Jones, Eva Steliarova-Foucher, Gilles Vassal, the SIOPE office and the ENCCA Project Management Team) who successfully engaged in this publication project, we have been able to highlight and suggest solutions for the specific challenges that cancer in children and adolescents currently presents. The contributions to the Series drew upon a global faculty of 34 experts from 19 countries, whose combined experience (including that of childhood cancer parents’ advocates) covers everything related to care, research, and education to continue to make progress and conveys our concerns to a broad audience of professionals in our field and policy-makers. The Series is an important contribution to the global discourse on paediatric oncology issues. This new initiative is timely, as the EU Clinical Trials Regulation (CTR) is currently under discussion at the European level. As you know, this piece of legislation will have a major impact on our work, by defining the whole paediatric oncology research environment in the years to come. The Series' publication coincides with a special event hosted by Glenis Willmott, EP Rapporteur of the EU Clinical Trials Regulation proposal, in collaboration with SIOPE, which debated these and other issues on childhood cancer at the EU parliament on 20 February 2013. You can download the Series' press release here and find more information on the Series here.
20 February 2013 EU Regulation on Clinical Trials: Joint position
SIOPE joins other European key stakeholders in a common position on the new proposal for a EU Regulation on Clinical Trials. Please read it here. 09 January 2013
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