What do centres of expertise gain from participating in an ERN?
Graessner: An immediate advantage is when doctors at such a centre of expertise are not sure of the right diagnosis or treatment, they can refer to the ERN’s multidisciplinary team consultation. Several experts in Europe then meet online to discuss the patient and form a recommendation for the referring centre of expertise. Other benefits include that ERNs maintain registries with data on patients with the relevant conditions, provide training to doctors, and develop guidelines, care standards and clinical decision support tools.
What do patients gain from this?
Graessner: Our slogan is: knowledge travels, not the patient. So in most cases, patients can visit a centre of expertise in their home country and get diagnostics and treatment through that centre, accessing the ERN expertise whenever needed. Another advantage for patients is that ERNs develop so-called patient journeys. These are visual overviews of the disease symptoms and care needs a patient may experience during different stages of the disease. These materials are now available for different disease groups and in several European languages (ERN-RND, EURO-NMD, epiCARE) In this way, patients can quickly and easily obtain knowledge about the disease, which incidentally also applies to family members and non-specialist doctors.
How do you see the near future of ERNs?
Graessner: After a development phase of several years, the ERNs are now to the point where they clearly add value, but there are still some important areas for improvement. The various centres of expertise are connected, but integration into national healthcare systems lags behind, for example when it comes to the national adoption of guidelines and care standards from the ERNs. To improve this integration, a three-year project called JARDIN was launched in early 2024. Another bottleneck is funding. So far, only the centres coordinating the networks, one centre per network, receive funding from the European Commission. Such a reimbursement is also needed for the other centres of excellence in the network, because participating in an ERN is now extra work and that is not sustainable in the long run.
(Excerpt from the interview with Holm Graessner by Moniek Veltman (for de neuroloog). The original article was published in Dutch here.)