OBJECTIVES & ACTIVITY AREAS
To make specialised know-how and life-saving paediatric oncology treatments broadly accessible, the ERN PaedCan will create a roadmap of healthcare centres that are renowned worldwide for their expertise in treating paediatric malignancies. This network will facilitate the lives of both healthcare providers and of patients whose conditions require specialist expertise and tools not widely available due to low case volumes and a lack of resources.
The ERN PaedCan will also implement eHealth technologies and improve interoperability across different institutions (e.g. through a virtual paediatric oncology tumour board network to share expertise and advice).
Finally, the ERNs will help young patients and their families make informed choices by providing clear information regarding access, quality, safety and reimbursement for treatments received in another EU country. All this will represent more treatment options and less red tape for young patients and their families.
ORIGIN OF THIS INITIATIVE
Cancer is a life-threatening disease and there’s still a long way to go to overcome inequalities, ensuring safer and good quality treatment across EU borders. The need to improve access to standard care across Europe and to increase the cure rates for all paediatric cancer types should be a priority for all those who care for childhood cancer patients and survivors.
SIOPE has been at the forefront in addressing health inequalities since several years by including this target in its electoral Manifesto of 2014, by detailing the objective “Equal Access” in the widely endorsed document ‘SIOPE Strategic Plan – A European Cancer Plan for Children and Adolescents’ and by including this purpose in the EU-funded projects ENCCA and PanCareSurFup.
The foundation of the present European Reference Network for paediatric oncology (ERN PaedCan) were subsequently laid by the ExPO-r-Net project (European Expert Paediatric Oncology Reference Network for Diagnostics and Treatment), which managed to consolidate the preconditions for this large multinational network. All these efforts successfully resulted in the official approval of the ERN PaedCan by the Board of EU Member States in December 2016.
The ERN officially kicked off on 29-30 June 2017 in Brussels, Belgium. It will facilitate the existing European healthcare structures in their provision of highly specialised, accessible and cost-effective cross-border healthcare to all childhood cancer patients. SIOP Europe and the paediatric haemato-oncology community stress their willingness to make this important initiative work in the long term, thereby striving for a future where all children and adolescents with cancer can be cured.
HOW DO ERNS WORK?
To review a patient’s diagnosis and treatment, ERN coordinators convene ‘virtual’ advisory boards of medical specialists across different disciplines, using a dedicated IT platform and telemedicine tools. The process and criteria for establishing an ERN and for selecting its members are set in EU legislation.
Read more here: http://paedcan.ern-net.eu