Paediatric Rare Tumours Network – European Registry
Improving the care of children with rare cancer through collaboration
PARTNER is a 3-year long project part of the European Reference Network for Paediatric Cancer (ERN PaedCan). It aims to create a Paediatric Rare Tumour European Registry dedicated to children and adolescents with VRT (Very Rare Tumours) linking existing national registries and to provide a registry for those countries not already having a registry for VRT in place.
During the last years, the European paediatric oncology community has increasingly recognised the necessity to develop projects dedicated specifically to rare paediatric tumours to overcome all these obstacles. Malignant tumours are rare disease in children with an annual incidence rate of 12,7 new cases per 100.000 children per year in Europe.
They are constituted by a wide spectrum of different histologies with various clinical and biological characteristics. Leukaemia and cerebral tumours are the most frequent diagnosis followed by less common entities. There is a group of paediatric very rare tumours (VRT), which is extremely heterogeneous.
Some VRT characteristically arise at the paediatric age, such as pleuropulmonary blastoma or pancreatoblastoma. Other tumours more commonly develop during adulthood or may even be frequent in adult patients (i.e. colon cancer or malignant melanoma) but they only rarely develop in children and adolescents. There is growing evidence that at least some of them are biologically and clinically distinct from their adult counterpart.
Lastly, a substantial group of “borderline” tumours with uncertain clinical behaviour and no standard treatments are usually also included in the group of VRT.
The strategic value of PARTNER in the field of public health is based on the European wide gathering of information on treatment of VRT and the provision of this information to experts generating new guidance recommendations for daily practice for use by ERN and non-ERN Institutions. The collection of data will contribute to optimised consultation of patients with VRTs. Consequently, experts will increase clinical research and knowledge.
- Identification of the VRT entities
- Selection of a core of variables
- Use of common definitions
- Implementation of harmonised procedures for data collection, data quality control and central review
PARTNER Project brochure
PARTNER Project factsheet
PARTNER Project website: www.raretumors-children.eu
Articles in media:
SciTech Europa, December 2018: The importance of collaboration to improve the care of children in Europe with very rare tumours.
Open Access Government (print copy, p111-113), October 2018: Improving the care of children in Europe with rare cancer.
Open Access Government (online), 28 August 2018: Improving the care of children in Europe with rare cancer.