Europe Recruiting Additional Healthcare Teams for Specialized Rare Disease Networks


Applied Clinical Trials

With a month left to join one of the 24 ERNs, Peter O'Donnell writes that this initiative is a welcomed demonstration of how cooperation can function in the common interest.

There’s just a month to join Europe’s networks of expertise for rare and complex diseases, the European Reference Networks1. Until 30 November, hospital-based specialists can apply to become members of one of the 24 European Reference Networks (ERNs) that the European Union launched in 2017, and that now include 956 healthcare units from 313 hospitals located in 26 countries. They cover a wide range, from bone disorders and pediatric cancers to endocrine conditions, and from epilepsies and congenital malformations to kidney diseases.

Created under the EU’s 2011 directive on cross-border healthcare, these networks bring together centers of expertise and reference centers of European hospitals to tackle rare or low-prevalence diseases and other complex conditions that require highly specialized healthcare. The aim is to allow specialists in Europe to share their experience with complex patient cases, and to provide advice on diagnosis and treatment. To review individual cases, ERNs convene ‘virtual’ advisory panels of medical specialists across different disciplines, using a dedicated IT platform and telemedicine tools. The underlying principle is that it is the knowledge travels, rather than the patient, with the intention of leading to economies of scale and more efficient use of costly resources.

The concept emerged from the challenge that knowledge and resources on specific rare conditions are scattered across Europe’s individual countries, none of which, operating alone, has the capacity to treat all rare and complex conditions. The EU’s networks help to connect the dots, maximizing expertise by cooperating and exchanging knowledge at European level, and giving patients across the EU access to the best expertise available.

It is a peculiarly European response to a peculiarly European problem-a multiplicity of small countries (even Germany, by far the biggest, has only 80 million inhabitants) with distinct healthcare systems and research infrastructures that suffer from a chronic lack of coordination or even communication with one another across the continent’s internal national frontiers. Add to that the specific challenges of tackling rare diseases: as many as 8,000 rare diseases affect the daily lives of around 30 million people in the EU. In oncology alone, there are almost 300 different types of rare cancers and each year more than half a million people in Europe are diagnosed with one of them. But many affected by a rare or complex have no access to diagnosis and high-quality treatment: where patient numbers are low, expertise and specialist knowledge are often scarce.

The membership application process can look daunting, since a healthcare team has to get endorsement from the head of its hospital and from its national health authority, and candidates are then screened by a board of representatives from the participating health authorities. But the benefits extend beyond the chance for taking part in reviews of complex cases. They include the opportunity to play a role in the development of guidelines and in training, and to join large clinical studies aimed at improving understanding of rare diseases. The patient data gathered also contributes to the development of new drugs and medical devices, and ERNs are influential in the emergence of new care models, and e-health solutions and tools.

At a time when Europe is facing a string of new tensions-ranging from internal disputes over migration, budgets or carbon-reduction targets (to say nothing of Brexit) to external challenges such as threats to the multilateral trading system, growing disorder in the Middle East, and the shifting power balance between the U.S.A., Russia and China-this local but effective initiative is a welcomed demonstration of how cooperation can function in the common interest.


Peter O'Donnell is a freelance journalist who specializes in European health affairs and is based in Brussels, Belgium




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