ERN EpiCARE is a network of 28 centres with expertise in the rare and complex epilepsies across 13 countries, developed to enhance diagnosis and ultimate management of these diseases. Since the launch of the European Reference Networks in March 2017 we have built on the existing pilot ERN e-pilepsy in developing an expanded network with regard to the range of diseases included. We have achieved all objectives set out in our initial SGA for the first 12 months.
The activities over the second year will be targeted at consolidating and further developing the network. The proposed care pathway for referral will be established to ensure accessibility and coordination with national networks. Online tools to aid evaluation of patients will continue in development, with a move to utilising the Clinical Patient Management System to enable discussion of complex patients.
A registry will be established and collaboration with Orphanet will enable revision of clinical phenotype genotype information available for all on specific diseases. Pilot treatment protocols will be developed to be utilised across all centres, along with guidelines in collaboration with specialist societies. There will be a further focus on training and education.
Through collaborative working, sharing of expertise and access to advanced diagnostics we will build on the number of individuals with refractory epilepsy having an underlying diagnosis and further options for treatment.