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EpiCARE – a European Reference Network for rare and complex epilepsies [ERN EpiCARE] [811547] - Operating Grant
WP1: Network Coordination by lead GOSH

Start month:1 - End month: 12

WP1: Network Coordination - coordination of the overall work of the EpiCARE network
WP3: Neuroimaging by lead GOSH

Start month:1 - End month: 12

WP3: Neuroimaging
WP7: Targeted medical therapies by lead GOSH

Start month:1 - End month: 10

Survey through network to determine existing protocols for treatment of rare epilepsies
Establish standardized protocols with outcome parameters for 5 key diseases to be utilized across network
WP9: Neonatal seizures by lead GOSH

Start month:1 - End month: 12

Establish pathway for expert review of clinical and EEG data (view via Babylink)
Establish regular meetings, either as virtual meetings or as face to face meetings alongside international conferences...
Establish pathway for expert review of clinical and EEG data (view via Babylink)
Establish regular meetings, either as virtual meetings or as face to face meetings alongside international conferences or meetings to discuss work package tasks and clinical cases.
Become member of ENPR-EMA network (European Network of Paediatric Research at the European Medicines Agency)
Finalise European guidelines for EEG monitoring in high risk neonates which will be available on the EpiCARE website

WP 10: Dietary treatment by lead GOSH

Start month:1 - End month: 8

Current list of guidelines to be provided to expert group; prioritization of guidelines to be developed
Meeting of expert group during ‘ketocollege’ June 2018
Development of online tutorials in co...
Current list of guidelines to be provided to expert group; prioritization of guidelines to be developed
Meeting of expert group during ‘ketocollege’ June 2018
Development of online tutorials in collaboaration with Matthews Friends; needs assessment for e-learning

WP III: Education & Training by lead GOSH

Start month:1 - End month: 12

Inventory of existing courses organized by EPiCARE centres with content relevant available on website
Identify needs of EPiCARE centres to assume required educational role,
Identify needs of European...
Inventory of existing courses organized by EPiCARE centres with content relevant available on website
Identify needs of EPiCARE centres to assume required educational role,
Identify needs of European chapters of the International League Against Epilepsy in collaboration with CEA-ILAE for further development of national and/or European based activities

WPIV: Research by lead GOSH

Start month:1 - End month: 12

Implementation of clinical database for research
Pilot through steering committee to assess suitability, first 50 cases
Inventory of all applications presented by EpiCARE members to national or intern...
Implementation of clinical database for research
Pilot through steering committee to assess suitability, first 50 cases
Inventory of all applications presented by EpiCARE members to national or international calls in which EPiCARE assets made available
Charter regulating data sharing

WP4: Clinical Neurophysiology by lead GOSH

Start month:1 - End month: 12

Start-up of the EpiCARE EEG-cloud
Uploading EDF files and testing data transfer and storage on the cloud
Beta version of the EpiCARE EEG-cloud
Selected centres will participate in testing the beta ve...
Start-up of the EpiCARE EEG-cloud
Uploading EDF files and testing data transfer and storage on the cloud
Beta version of the EpiCARE EEG-cloud
Selected centres will participate in testing the beta version of the cloud
Webinar on the use of EpiCARE EEG-cloud
A webinar for teaching the participating centres how to use the SCORE in the EpiCARE EEG-cloud
Data upload and scoring
Uploading and scoring real (de-identified) EEG data

WP6: Neuropathology by lead GOSH

Start month:1 - End month: 12

A neuropathology teaching course will be organized in July 26-29, 2018 at the University Hospital in Erlangen.
Establish a web-based reading and teaching platform for neuropathology and epilepsy surge...
A neuropathology teaching course will be organized in July 26-29, 2018 at the University Hospital in Erlangen.
Establish a web-based reading and teaching platform for neuropathology and epilepsy surgery.

WP7: Targeted medical therapies by lead GOSH

Start month:1 - End month: 12

Survey through network to determine existing protocols for treatment of rare epilepsies
Establish standardized protocols with outcome parameters for 5 key diseases to be utilized across network
WP8: Surgery (E-pilepsy) by lead GOSH

Start month:1 - End month: 12

Continue to expand the number and participants to the E-care visioconfences on epilepsy surgery, moving to use of the CPMS
Further develop the IT platform devoted to presurgical post processing and vi...
Continue to expand the number and participants to the E-care visioconfences on epilepsy surgery, moving to use of the CPMS
Further develop the IT platform devoted to presurgical post processing and visoconferences, and make available for use by other workpackages in EpiCARE by
Installing centre specific readers of EEG data
Installing Brainstorm software for analysis of individual brain recordings (MEG, EEG, fNIRS, ECoG and depth electrodes)
Upgrading the currently available Curry8 software (3 licenses) with MAP for use in post processing
Creation of tutorials and how-to’s for the use of the software installed on the platform. (monthly - one tutorial per software)

WP I: E-database by lead GOSH

Start month:1 - End month: 12

Development of the EpiCARE registry Establishment of relevant clinical parameters for utilization in REDCap format
Pilot use of EpiCARE registry
WP 13: E-guidelines by lead GOSH

Start month:1 - End month: 12

Establish the Task force for review of existing guidelines
Establish inventory of existing guidelines, with links through website
Link to established guidelines in English and various other languages ...
Establish the Task force for review of existing guidelines
Establish inventory of existing guidelines, with links through website
Link to established guidelines in English and various other languages through the website
Identification of the unmet needs and selection of the topics for future activities on guidelines

WP 14: Education & Training by lead GOSH

Start month:1 - End month: 12

Inventory of existing courses organized by EPiCARE centres with content relevant available on website
Identify needs of EPiCARE centres to assume required educational role,
Identify needs of European...
Inventory of existing courses organized by EPiCARE centres with content relevant available on website
Identify needs of EPiCARE centres to assume required educational role,
Identify needs of European chapters of the International League Against Epilepsy in collaboration with CEA-ILAE for further development of national and/or European based activities
Work on recommendations as to how EpiCARE centres can host neurologists/child neurologists
Collect information on all available educational material on rare and complex epilepsies for patients and families in collaboration with ePAG group and Orphanet and widen availability

WP15: Research by lead GOSH

Start month:1 - End month: 12

Implementation of clinical database for research
Pilot through steering committee to assess suitability, first 50 cases
Inventory of all applications presented by EpiCARE members to national or intern...
Implementation of clinical database for research
Pilot through steering committee to assess suitability, first 50 cases
Inventory of all applications presented by EpiCARE members to national or international calls in which EPiCARE assets made available
Charter regulating data sharing

WP 16: Clinical trials by lead GOSH

Start month:1 - End month: 12

Develop an EpiCARE-based panel of experts to validate syndromic diagnosis and seizure classification for individual patients to be enrolled in clinical trials
Develop a database of clinical trials con...
Develop an EpiCARE-based panel of experts to validate syndromic diagnosis and seizure classification for individual patients to be enrolled in clinical trials
Develop a database of clinical trials conducted to date in rare and complex epilepsy syndromes
Survey across network to determine prioritization of treatments to be tested in specific syndromes

Details
Start date: 01/03/2018
End date: 28/02/2019
Duration: 12 month(s)
Current status: Finalised
Programme title: 3rd Health Programme (2014-2020)
EC Contribution: € 195 425,02