SIOP Europe together with Coordinators for the PARTNER Project and ERN PaedCan highlight the importance of collaboration in order to improve the care of children in Europe with rare cancer.
The recognition and treatment of patients with rare tumours pose a challenge for paediatric oncologists and it may take many years to establish diagnostic guidelines and treatment concepts. Even at the European level, some diseases are too rare to enable the recruitment of a sufficient number of cases to conduct clinical trials leading to evidence based treatment guidelines. Therefore, the need to develop international collaborations dedicated to paediatric VRTs is imminent.
The European paediatric oncology community, including all SIOP Europe members, have increasingly recognised the necessity to develop projects dedicated specifically to rare paediatric tumours to overcome all these obstacles. Investing more funds in investigating the relatively uncharted territory of rare cancers may be one way to maximise impact. Introducing the PARTNER project PARTNER (Paediatric Rare Tumours Network – European Registry) is a three-year EU project that is part of the European Reference Network for Paediatric Cancer (ERN PaedCan). Over the three-year duration, it aims to create a Paediatric Rare Tumour European Registry dedicated to children and adolescents with very rare tumours (VRTs) linking existing national registries and to provide a registry for those countries that do not already have a registry for VRTs in place.
The objective of this project is a platform for VRTs that could represent a model for a comprehensive approach (case registration, international case consultation, treatment recommendations and website to provide information to parents/patients) in the field of rare diseases. It is expected that the PARTNER project will strengthen the collaboration between the countries involved and stimulate the formation of similar groups in other European countries. In addition, collaboration with already existing disease-oriented registries and collaborative groups will be actively sought, as worldwide initiatives are necessary. This will improve research quality hopefully and the outcomes of treatment for children who have, until recently, been rather neglected.
Links to the European Reference Networks in Paediatric Cancer (ERN PaedCan) The European Reference Network on Paediatric Cancer (ERN PaedCan) aims to help national health systems cooperate in the interest of patients and is, therefore, the ideal framework within this multinational collaboration on VRTs. The PARTNER project is very much within the scope of the ERN PaedCan network facilitating the lives of both healthcare providers and patients, whose conditions require specialist expertise and tools not widely available, due to low case volumes or a lack of resources. By cooperating and exchanging life-saving knowledge at European level, patients across the EU should be able to gain access to the best expertise available.
This network offers a platform for virtual consultations allowing information to travel, rather than the patients and supports training and knowledge sharing.
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