Vassal Gilles, Fitzgerald Edel, Schrappe Martin, Arnold Frédéric, Kowalczyk Jerzy, Walker David, Hjorth Lars, Riccardi Riccardo, Kienesberger Anita, Jones Kathy-Pritchard, Valsecchi Maria Grazia, Janic Dragana, Hasle Henrik, Kearns Pamela, Petrarulo Giulia, Florindi Francesco, Essiaf Samira, Ladenstein Ruth
Direction of Clinical Research, Gustave Roussy and Université Paris-Sud, Villejuif, France.
Pediatr Blood Cancer. 2014 Sep;61(9):1551-7. doi: 10.1002/pbc.25044. Epub 2014 Apr 7.
In Europe, 6,000 young people die of cancer yearly, the commonest disease causing death beyond the age of 1 year. In addition, 300,000-500,000 European citizens are survivors of a childhood cancer and up to 30% of them have severe long-term sequelae of their treatment. Increasing both cure and quality of cure are the two goals of the European paediatric haematology/oncology community. SIOPE coordinates and facilitates research, care and training which are implemented by the 18 European study groups and 23 national paediatric haematology/oncology societies. SIOPE is the European branch of the International Society of Paediatric Oncology and one of the six founding members of the European Cancer Organisation. SIOPE is preparing its strategic agenda to assure long-term sustainability of clinical and translational research in paediatric malignancies over the next 15 years. SIOPE tackles the issues of equal access to standard care and research across Europe and improvement of long term follow up. SIOPE defined a comprehensive syllabus for training European specialists. A strong partnership with parent, patient and survivor organisations is being developed to successfully achieve the goals of this patient-centred agenda. SIOPE is advocating in the field of EU policies, such as the Clinical Trials Regulation and the Paediatric Medicine Regulation, to warrant that the voice of young people is heard and their needs adequately addressed. SIOPE and the European community are entirely committed to the global agenda against childhood cancers to overcome the challenges to increasing both cure and quality of cure of young people with cancer.
在欧洲，每年有6000名年轻人死于癌症，这是1岁以上人群中最常见的致死疾病。此外，30万至50万欧洲公民是儿童癌症幸存者，其中高达30%的人有严重的长期治疗后遗症。提高治愈率和改善治疗质量是欧洲儿科血液学/肿瘤学界的两大目标。欧洲儿科肿瘤学会（SIOPE）协调并推动由18个欧洲研究小组和23个国家儿科血液学/肿瘤学会开展的研究、护理和培训工作。SIOPE是国际儿科肿瘤学会的欧洲分支机构，也是欧洲癌症组织的六个创始成员之一。SIOPE正在制定其战略议程，以确保未来15年儿科恶性肿瘤临床和转化研究的长期可持续性。SIOPE解决了欧洲各地标准护理和研究的平等获取问题以及改善长期随访的问题。SIOPE为培训欧洲专家制定了一份全面的教学大纲。正在与家长、患者和幸存者组织建立强有力的伙伴关系，以成功实现这一以患者为中心议程的目标。SIOPE在欧盟政策领域进行倡导，如临床试验法规和儿科药物法规，以确保年轻人的声音被听到，他们的需求得到充分满足。SIOPE和欧洲社会完全致力于全球抗击儿童癌症议程，以克服提高癌症患儿治愈率和治疗质量方面的挑战。
