Rare Epilepsies / Projects

3rd Health Programme (2014-2020)
A European Network for Rare and Complex Epilepsies [EpiCARE]
We propose a European Reference Network for the care of individuals with rare and complex epilepsy – EpiCARE. This will build on the successful pilot ERN E-pilepsy developed to raise awareness and a...
We propose a European Reference Network for the care of individuals with rare and complex epilepsy – EpiCARE. This will build on the successful pilot ERN E-pilepsy developed to raise awareness and availability of epilepsy surgery. The rare and complex epilepsies form a group of >137 diseases where epilepsy is the predominant feature with an impact on neurodevelopment, Quality of Life and mortality. Many more remain unrecognised. We have a network of 28 centres from 13 countries, all fulfilling the core criteria for expertise in this group of patients. EpiCARE will draw on this expertise to facilitate the diagnosis, care and management of individuals with rare and complex epilepsies across Europe. This will be through the delivery of care utilising e-health, developed by a series of workpackages (core networks) optimising diagnosis through access to specialised laboratory diagnostics, neuroimaging review, neurophysiology, neuropsychology, and neuropathology and optimising therapeutics by targeted therapies, surgery (through continuation of the E-pilepsy pilot ERN), and dietary intervention. The network will care for the epilepsies through all ages from birth to old age, with a specific group for neonatal seizures, and a coordinated work on transition between age groups. A series of sub networks will ensure the coordination and development of the network, with the utilisation of registries, and dissemination to stakeholders. Harmonisation of care will be promoted through the accessibility of the experts, availability of guidelines and facilitation of education and training. Data will be collated to enable design of clinical trials, with common outcome data elements, and to address research priorities. The EpiCARE network for rare and complex epilepsies will reduce the geographical inequalities and knowledge gap through utilisation of e-health and thus improve the outcomes of these patients substantially.
Start date: 01/03/2017 - End date: 28/02/2018

Call: EUROPEAN REFERENCE NETWORKS SPECIFIC GRANT AGREEMENTS COVERING YEAR 2017
Topic: Rare Epilepsies
3rd Health Programme (2014-2020)
EpiCARE – a European Reference Network for rare and complex epilepsies [ERN EpiCARE]
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 launc...
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.

Start date: 01/03/2018 - End date: 28/02/2019

Call: EUROPEAN REFERENCE NETWORKS SPECIFIC GRANT AGREEMENTS COVERING YEAR 2018
Topic: Rare Epilepsies
3rd Health Programme (2014-2020)
EpiCARE - a European Reference Network for rare and complex epilepsies [ERN EPICARE]
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. Complex epilepsi...
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. Complex epilepsies are those requiring multidisciplinary management through a care pathway or for comorbidity, with or without known aetiology, for example the surgically treatable epilepsies requiring a high level of multidisciplinary expertise and diagnostic resource (including video-EEG analysis, functional and/or structural neuroimaging). Delivery of such expertise can be enhanced through the use of e-tools, minimising the need for patients to travel. EpiCARE activities over the third, fourth and fifth years will be targeted at consolidating and further developing the EpiCARE network. EpiCARE aims at improving accessibility of detailed diagnostics to individuals of all ages with rare and complex epilepsies across Europe, including clinical evaluation and investigation. A care pathway for patients’ referral will be established throughout Europe, and further linkage with national health care networks will be coordinated. Online tools to aid the diagnosis of patients will be established. The development of treatment protocols and the monitoring of standardised outcomes of rare and complex epilepsies will be continued. Awareness and accessibility to protocols for physicians and individuals with rare and complex epilepsies across Europe for treatment will be further improved. There will be a further focus on training and education opportunities. We will also enhance the opportunities for building registries, and collaborative research for the benefit of individuals with rare and complex epilepsies across Europe.
Start date: 05/03/2019 - End date: 04/03/2022

Call: Multiannual Grant Agreements for European Reference Networks
Topic: Rare Epilepsies
3rd Health Programme (2014-2020)
A European Reference Network for Rare and Complex Epilepsies [EpiCARE]
We propose a European Reference Network for the care of individuals with rare and complex epilepsies (<5 in 10,000) – EpiCARE. The successful pilot ERN E-pilepsy for epilepsy surgery (EU EAHC 534055...
We propose a European Reference Network for the care of individuals with rare and complex epilepsies (<5 in 10,000) – EpiCARE. The successful pilot ERN E-pilepsy for epilepsy surgery (EU EAHC 534055, 2014) highlighted the need for a larger ERN dedicated to all aspects of rare and complex epilepsies; a group of >137 different diseases where epileptic seizures are the predominant feature, impacting on neurodevelopment, quality of life and mortality. Many more remain unrecognised. To fulfil the core criteria for expertise in this group of patients we have formed a network of 28 centres from 13 European countries. EpiCARE will draw on this expertise to facilitate the diagnosis, care and management of individuals with rare and complex epilepsies across Europe. The network will care for the epilepsies through all ages from birth to old age. This will be through the delivery of harmonised care across the EU utilising e-health, developed by a series of workpackages (core networks) optimising diagnosis through access to specialised laboratory diagnostics, neuroimaging review, neurophysiology, neuropsychology, and neuropathology and optimising therapeutics with targeted medical therapies, surgery, and dietary intervention. A series of sub networks will ensure the coordination and development of EpiCARE, with consolidation of patient registries specific to rare and complex epilepsies, and dissemination to stakeholders. Harmonisation of care will be promoted through structured collaboration between experts, the availability of guidelines, facilitation of education and training and close partnership with lay associations. Data will be collated to enable design of clinical trials, with common outcome data elements, and to address research priorities. EpiCARE will reduce the geographical inequalities and knowledge gap across Europe through utilisation of e-health and thus improve both the health outcomes and socio-economics associated with these patients.
Start date: 06/03/2017 - End date: 05/03/2022

Call: European Reference Networks
Topic: Rare Epilepsies