Position statement on access to care in rare liver diseases: advancements of the European reference network (ERN) RARE-L
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(2019) 14:169
POSITION STATEMENT
Open Access
Position statement on access to care in rare liver diseases: advancements of the European reference network (ERN) RARELIVER Lucas H. P. Bernts1, David E. J. Jones2, Marleen M. Kaatee3, Ansgar W. Lohse4, Christoph Schramm4, Ekkehard Sturm5 and Joost P. H. Drenth1*
Abstract The European Reference Network for rare liver diseases (ERN RARE-LIVER) is a Europe-wide network of paediatric and adult hepatologists from expert centres in close collaboration with patient advocates from the various diseaseareas covered in our ERN. The ERN is focused on providing more equitable care across Europe and creates a network of both medical specialists and patient experts in rare liver disease. This position paper summarizes the achievements of the first year and plots the route for the near future for ERN RARE-LIVER, as discussed during a strategy meeting that took place 27 and 28 February 2018 in Nijmegen, the Netherlands. ERN RARE-LIVER has established itself as a group with experts, hospitals and patients. One of the tools to improve communication is the clinical patient management system (CPMS) that allows access to expert consultation by European physicians confronted with a patient with rare liver disease. ERN RARE-LIVER will function as the platform to improve healthcare by initiating registries, foster research efforts and coordinate development of clinical guidelines in Europe. Keywords: European reference network, ERN, Rare liver disease, Autoimmune liver disease, Paediatric liver disease, Structural liver disease
Background European Reference Networks (ERN) for rare diseases (Fig. 1) have been initiated by the European Commission as a means to achieve equitable care for rare diseases across Europe [1]. The ERN programme started in earnest in 2017 with the establishment of 24 ERNs within a European legal framework dedicated to rare or low prevalence complex diseases. This brought together more than 300 health care providers (hospitals) and 900 expert teams. The novelty of the programme offers a certain degree of freedom (and uncertainty) with respect to path and direction to take [2]. The vision of the establishment of ERNs was to realize more equitable access to the best healthcare across Europe and to drive * Correspondence: [email protected] 1 RARE-LIVER European Reference Network; Department of Gastroenterology and Hepatology, Radboud university medical centre, P.O. Box 9101, 6500, HB, Nijmegen, the Netherlands Full list of author information is available at the end of the article
improvement of standard of care and clinical knowledge of rare diseases in Europe. Working closely with the clinical centres, physicians and patients, the ERN must disseminate best clinical practice, use innovative IT solutions to enable clinicians to access expert knowledge across Europe, update clinical guidelines to enable standardisation of care and to provide patients with relevant high quality information. ERN RARE-LIVER
The European Reference Network for rare liver diseases (ERN RARE
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