SIOPE as Leader of the Paediatric Work Package of the Joint Action on Rare Cancers

jarcThe European Commission and Member States have recently initiated a Joint Action on Rare Cancers (JARC) in the framework of the EU Health Programme. The aim is to address the lack of systematic inclusion of rare cancers – including paediatric malignancies – in national cancer plans across Europe, based on the Implementation Report on the EU action on cancer over the past years.

Driven by both EU and national actors with active participation of academia, professional societies, and patient organisations, the JARC strives to formulate rare cancer-specific recommendations to policy makers and to support the roll out and implementation of the European Reference Networks (ERNs) in the field of rare cancers. The JARC is coordinated by the ‘Istituto Nazionale dei Tumori’ of Milan, Italy (backed by the Italian Ministry of Health).

In this framework, SIOPE is set to lead one of the principal thematic pillars of the initiative – the Work Package on Childhood Cancers. SIOPE’s nomination as JARC Associated Partner and Work Package Leader is an important milestone made possible with the support of our members and the endorsement by public authorities at national level. SIOPE was endorsed in particular by the Federal Ministry of Health, Germany.

The JARC Childhood Cancers Work Package is set to address the specific needs of children and adolescents with cancer, building on the SIOPE Strategic Plan and our ongoing cooperation and dialogue with parents, patients and survivors.

More specifically, the Childhood Cancer Work Package will engage in 4 Tasks and corresponding focus areas:

  • To make recommendations on accessibility of standard treatments across Europe (essential medicines and radiotherapy);
  • To make recommendations to increase and facilitate timely access to innovative therapies for children and adolescents with newly diagnosed high-risk and relapsed malignancies;
  • To identify solutions for delivering optimal care and research for young people with extremely rare cancers;
  • To make recommendations on models of healthcare for survivors of childhood cancers, including long-term follow-up, transition to adult medicine, and the use of a Survivorship Passport.

All the tasks in the Work Package are an integral part of the SIOPE agenda, and build on the existing initiatives taken forward by our partners in several EU projects (ENCCA, ExPO-r-Net, PanCareSurFup and the EPAAC Joint Action).

The decision to establish the Paediatric Work Package was particularly significant, considering that the SIOPE community is already piloting the ERN concept though the project ExPO-r-Net (the European Expert Paediatric Oncology Reference Network for Diagnostics and Treatment). In the framework of the paediatric oncology ERN currently being built via ExPO-r-Net, SIOPE will share expertise with the adult cancer community within the JARC and further strengthen the existing cooperation between paediatric and adult oncology.

SIOPE will moreover contribute to other JARC Work Packages – Epidemiology, which will include some of the paediatric oncology needs identified by the ‘clinical epidemiology platform for outcome research’ (also known as the PICORET initiative), Assuring Quality of Care, Education and Policy.

The JARC will be officially launched on 7 November 2016 in Luxembourg in the presence of the European Commissioner for Health and Food Safety Vytenis Andriukaitis.