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European Reference Network for Rare Neurological Diseases - SGA years 3-5 [ERN-RND] [844802] - Operating Grant
Project abstract

ERN-RND is a network of 32 Healthcare Providers from 13 EU member states. ERN-RDN builds on existing expert centres and mature networks dedicated to rare neurological diseases (RND) as well as established rare disease infrastructures such as Orphanet, EURORDIS and RD-Connect. Through coordination and knowledge transfer, ERN-RND shall establish a patient-centred network to address the needs of patients with RND of all age groups, with or without a definite diagnosis, by implementing an infrastructure for diagnosis, evidence-based management, treatment and collection of patient data. The network will develop, disseminate, implement and supervise best practice guidelines and care pathways to optimize patient care and facilitate training and capacity building in the field. A special effort will be aimed to member states with less developed infrastructure for caring for RND patients, where no current partners are located, or with only affiliated or collaborative partners. ERN-RND will inform planning of European and national health care in RND, facilitating translation of research activities into clinical practice and the development of future therapies. Keeping in line with ERN-RND’s strategic objectives the seven most important operational targets for year 3-5 are:
• Role-out of CPMS in ERN-RND for disease group specific use cases
• Define responding strategies for disease groups specific most important care needs for RND in the EU
• Implement EQA scheme for genetic diagnosis of RND
• Together with the European Academy of Neurology put in place process for development of RND clinical practise guidelines
• Implement ERN-RND training program consisting of training workshops, fellowships and e-learning
• Demonstrate value of RND registries for trial-readiness
• Establish ERN-RND web-site as THE European RND disease knowledge hub

Start date: 01/03/2019
End date: 28/02/2022
Duration: 36 month(s)
Current status: Finalised
Programme title: 3rd Health Programme (2014-2020)
EC Contribution: € 600 000,00