SIREDO Oncology Center (Care, Innovation and Research for Children, Adolescents and Young Adults with Cancer), Institut Curie, PSL University, Paris, France.
Pediatric Oncology Unit, Fondazione IRCCS Istituto Nazionale dei Tumori di Milano, Milan, Italy.
Pediatr Blood Cancer. 2021 Jun;68 Suppl 4:e29072. doi: 10.1002/pbc.29072. Epub 2021 Apr 29.
The PARTNER project (Paediatric Rare Tumours Network - European Registry) was launched in 2016. PARTNER aims to create a European Registry dedicated to children and adolescents with very rare tumors (VRT). It links existing national registries and provides a registry for those countries in which a VRT registry has not yet been created. This consortium is composed of the various national cooperative groups and their respective member institutions. The strategic value of this project is based on the Europe-wide data collection concerning the treatment of VRTs. These data are provided to experts and constitute the basis for new clinical practice guidelines for use by ERN (European Reference Network) and non-ERN institutions. The proposed tasks and milestones will increase collaboration in the field of pediatric oncology among member states and will also facilitate the inclusion of low health expenditure average rate (LHEAR) countries in this process. In addition, this project creates a platform for VRTs that may represent a model on how to elaborate a comprehensive approach (case registration, international case consultation and treatment recommendations, and website to provide information for parents/patients) for rare diseases.
PARTNER 项目（儿科罕见肿瘤网络-欧洲登记处）于 2016 年启动。PARTNER 的目标是创建一个专门针对儿童和青少年的非常罕见肿瘤（VRT）的欧洲登记处。它链接了现有的国家登记处，并为那些尚未创建 VRT 登记处的国家提供了一个登记处。该联盟由各种国家合作团体及其各自的成员机构组成。该项目的战略价值基于欧洲范围内关于 VRT 治疗的数据收集。这些数据提供给专家，构成了 ERN（欧洲参考网络）和非 ERN 机构使用的新临床实践指南的基础。拟议的任务和里程碑将增加成员国在儿科肿瘤领域的合作，并促进低卫生支出平均率（LHEAR）国家参与这一进程。此外，该项目为 VRT 建立了一个平台，这可能为制定罕见疾病的综合方法（病例登记、国际病例咨询和治疗建议以及为家长/患者提供信息的网站）提供了一个模式。
