Paediatric cancer is a very rare disease that comes in multiple subtypes and represents both a life-threatening disease and a major public health issue.
With 35,000 new cases and 6,000 children dying each year, paediatric cancer remains the leading cause of death from disease for children and adolescents.
Average survival rates have improved over recent decades and although progress has been dramatic for some conditions, outcomes remain very poor for others. Survival rate inequalities are a major challenge for Europe, with worse outcomes experienced in Eastern European countries.
The European Reference Network on Paediatric Cancer (ERN PaedCan) aims to help national health systems cooperate in the interest of patients.
The goal is to reduce inequalities in childhood cancer survival by providing high-quality, accessible and cost-effective cross-border healthcare for children and adolescents with cancer, regardless of where they live. The network currently unites 57 institutions from 18 European countries.
ERN PaedCan implements eHealth technologies and facilitates cross-border consultations (e.g. via the Clinical Patient Management System (CPMS) provided by the European Commission), to share expertise of rare conditions and give cross-border advice.
"With 35,000 new cases and 6,000 children dying each year, paediatric cancer remains the leading cause of death from disease for children and adolescents"
To ensure that specialised knowledge and life-saving paediatric oncology treatments are broadly accessible, ERN PaedCan has created a roadmap of pan-European healthcare centres renowned for their expertise in treating paediatric cancer.
This network facilitates 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.
The network also helps 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, ensuring more treatment options and less red tape for young patients and their families.
There is still a long way to go to overcome inequalities and ensure safer and better treatment across EU borders. The need to improve access to standard care across Europe and to increase cure rates for all paediatric cancer types should be a priority.
As EU Commissioner for Health and Food Safety, Vytenis Andriukaitis has said, “no country alone has the knowledge and capacity to treat all rare and complex conditions”.
"As EU Commissioner for Health and Food Safety, Vytenis Andriukaitis has said, “no country alone has the knowledge and capacity to treat all rare and complex conditions”"
Nonetheless, by cooperating and exchanging life-saving knowledge at European level, patients across the EU will be able to gain access to the best expertise available. This network offers a platform for the development of guidelines, training and knowledge sharing.
There is no doubt that cross-border healthcare will unite specialists across Europe in tackling complex or rare cancer conditions that require highly specialised interventions and the concentration of knowledge and resources.
ERN PaedCan will increase childhood cancer survival and quality of life in the long term by fostering cooperation, research and training, with the ultimate goal of reducing current inequalities in childhood cancer survival and healthcare capabilities across EU Member States.
It enables access to data diagnostics and treatments by facilitating the exchange of knowledge and expertise, allowing information to travel, rather than the patients, through the implementation of a Virtual Consultation System.
I believe that ERN PaedCan will provide concrete results for many patients so that they are no longer looking for answers in the dark but instead can benefit from the best knowledge available in Europe so they may lead healthier and longer lives.