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Peter O'Donnell is a freelance journalist who specializes in European health affairs and is based in Brussels, Belgium.
The European Reference Networks aims to join the efforts of the best specialists in Europe to tackle complex or rare medical conditions. The goal is to create networks covering a specific disease with an emphasis on procedures or techniques related to treatment.
Specialized clinical trial centers in Europe are not accustomed to getting smartly-worded enticements to involvement from the European Union. Documents from Brussels usually carry titles like "Regulation No. 536/2014 of the European Parliament and of the Council on clinical trials on medicinal products for human use, and repealing Directive 2001/20/EC." So an attractive pamphlet with the strap-line "Share. Care. Cure" that recently popped through letterboxes (yes, they still exist) attracted some surprised attention. The tone of the copy it carried did too, because it began: "Imagine if the best specialists from across Europe could join their efforts to tackle complex or rare medical conditions that require highly specialised healthcare and a concentration of knowledge and resources. That’s the purpose of the European Reference Networks and it’s becoming a reality." This racy approach to recruiting top-flight medical specialists is having some success. Hundreds of hospitals, medical societies and clinical trial centers have shown up to meetings and sent off for details of this new scheme, which is due to start delivering results later this year. Right now, potential participants across Europe are setting up consortia and networks and submitting bids for the support that the scheme will offer, in time to meet a June deadline. The objective is to create around 20 such networks, each one covering a broad therapeutic area, and with an emphasis on multidisciplinary, bringing together healthcare professionals and all procedures or techniques related to the diagnosis or treatment of the disease covered by each network. Leading clinical trial centers are hooking up with hospitals, universities, biobanks, medical societies and data and communications specialists to form new groupings that are able to concentrate expertise and to offer their specialized services across the 28 European Union countries. Professor Kate Bushby of Newcastle University has called this strategy for a holistic approach to rare diseases a "huge opportunity." One clear advantage she sees is that it can help provide critical mass of both patients and expertise in particularly low prevalence disease areas. Professor Ruth Ladenstein of Vienna, another strong advocate, has pointed out how treatment of pediatric retinoblastoma could be improved across Europe by expanding a network that is already exploring major changes in treatment paradigms, such as intra-arterial and intravitreous chemotherapy or use of pre-enucleation chemotherapy. At present, this highly specialized multidisciplinary care is available in a few centers, but is still fragmented in EU countries with low patient accrual. Similarly, the treatment of very rare tumors, each of them with their own peculiar diagnostic, clinical, biological and treatment features, is hampered because there is no standard treatment to recommend, and even large oncology centers see very few cases each year. According to Ladenstein, there is a need to build the evidence, because the special diagnostic and treatment skills needed, such as special surgery or radiotherapy techniques, are not available in every center. So far, the picture emerging is that networks are likely to be formed in approximately a dozen areas, including the rarer forms of disease affecting bone, eyes, liver, skin and rare cancers. Tentative proposals are under preparation for endocrine, vascular and cardiac disease. The scheme is breaking new ground in its ambition to link expertise not only across disciplines but also across national borders within the EU. The immediate benefits for patients with rare or complex diseases should be easier access to the best treatment. But longer-term benefits to emerge as the networks get underway include better access to potential trial participants, and a boost to wider medical research from the concentration and focus of expertise. If the outcome lives up to the promise of the promotion, it could signal a new start to making the most of some of Europe's assets – an exercise all the more acutely needed at a period when it often looks as though Europe is losing its capacity to maximize its potential. Peter O'Donnell is a freelance journalist who specializes in European health affairs and is based in Brussels, Belgium