Launch of the ERN Call: The Paediatric Oncology Community will Jointly Apply

4Last 16 March 2016 the European Commission’s Directorate for Health (DG SANTE) published a call to establish European Reference Networks (ERNs). This is the first call for ERNs published by the European Commission (in line with the EU Directive on Cross-Border Healthcare and implementing decision of 1 March 2014). Only those ERNs that apply until 21st June proposals which will be positively assessed and finally approved will be eligible for receiving a grant (co-funding) for management costs. Those who apply later will receive the official accreditation and the potential  for later funding by ERN specific calls. A 3rd ERN Conference will officially kick-off all the approved ERNs in February 2017. In this framework, the European Commission recognised paediatric oncology as a stand-alone European Reference Network (ERN) in the rare cancers field. Each ERN is a network connecting highly specialised healthcare providers for the purpose of improving access to diagnosis, treatment and the provision of high-quality healthcare for patients with conditions requiring a particular concentration of resources or expertise in Europe. The SIOPE community decided to answer to this call and to submit an application for an ERN focusing on paediatric haemato-oncology (PaedCan ERN). A paediatric cancer ERN has the potential to become a strong network, and presents the advantages of a clear structure for healthcare providers/patients to provide cross-border healthcare (CBHC), the possibility to build twinning structures for identified centres in lower income European countries to reduce inequalities, as well as a basis for negotiating compensation schemes for CBHC. For childhood cancer healthcare professionals, who are already widely networking for both patient care and research, this new ERN represents the formalisation of their existing structures and practices in highly specialised healthcare and will take them to the next level. 5 As a logical extension of the ExPO-r-Net, funded by DG SANTE, Project Coordinator and SIOPE Board Member Professor Ruth Ladenstein and her institution CCRI took the lead in preparing the ERN application on behalf of the paediatric oncology community. The present 2016 call offers the opportunity to any group of at least 10 healthcare providers established in at least 8 Member States to collectively respond with a proposal to establish an ERN in a given field of expertise by the deadline of 21 June 2016. There is a parallel call for grants for the approved networks, however funding for established networks will be limited to a maximum of 200.000€ per year and will only allow to support a few organisational structures of established ERNs. A second chance to apply to become an ERN, but not for funding, is expected to open on 23 June 2016 with deadline on 22 July 2016. The coordinating institution is thus currently finalising a list of all the centres which will be included in the network of coordination, as defined within the ExPO-r-Net project as well through the support of the National Societies of Paediatric Haemato-Oncology (NaPHOS), the European Clinical Trial Groups (ECTGs) and last but not least have achieved a national designation. Although the original focus of ExPO-r-Net was to first concentrate on a few rare paediatric cancer indications like hepatoblastoma, retinoblastoma and very rare tumours, the PaedCan ERN will have a broader scope and will also include the other types of childhood cancers including leukaemia. Many centres have already expressed their interest to participate. On behalf of SIOPE and the ExPO-r-Net project, Professor Ladenstein attended the European Commission’s info day on 7 April 2016. This meeting provided a better definition of all the technical details needed to prepare the call application: individual healthcare providers should supply the required documentation to the ERN Coordinator, who will centralise the process. Then, there will be two independent evaluations: one at the European level (the network defines itself and presents the  partner centres chosen through a bottom up process at the level of European Clinical Trial Groups  and one at the national level (European member states have to agree with those choices). As each EU Member State has a specific procedure for that, it was promoted to act via the national representatives in the ERN Board of Member States. 6In summary, the creation of these patient-centred and clinically-led networks of healthcare providers aims to improve the quality, safety and access to quality expert healthcare across Europe for complex  conditions requiring a concentration of expertise. In spite of the fact that some aspects still need to be defined and further developed – such as which other players could be involved in the ERNs as well as the exact services which will be provided (e.g. the inclusion of research aspects in the ERN) – the innovative character of ERNs relies in their multi-disciplinarity provided via European virtual tumour boards and visibility of reference sites for specific interventions, in their capacity to overcome fragmentation and to identify cancer subtypes where CBHC may provide an added value to patient care and improved outcomes. More information: