EpiCARE held its 2nd Annual Meeting on the 22nd-23rd February 2019 in London at the Holiday Inn Bloomsbury Hotel.
On Friday 22nd February, we had a selection of expert group meetings running parallel for the following groups:
– WP10 – Ketogenic diet expert group meeting
– WP3 -Neuroimaging expert group meeting
– WP4 – Neurophysiology expert group meeting
– WPI – Registry meeting
– WP8 – Epilepsy Surgery (E-pilepsy) expert group meeting
– WP9 – Neonatal seizures expert group meeting
– WP7 – Targeted medical therapies expert group meeting
A CPMS set-up session was arranged for those who did not have an account with our new CPMS Helpdesk coordinator, Arunganesh Velurajah.
The Steering Committee had a joint face-to-face meeting in the evening and from 8pm all participants were invited for dinner.
On day 2, Saturday, 23 February 2019 the Annual EpiCARE continued with a general assembly. The work package leads gave a short update about their projects in the previous year and what they were planning for the year to come. Our patient representatives had a lovely introduction and a talk about how ePAGs can support the work of ERNs.
The assembly discussed the referral pathway, periodic reporting and auditing, also a there was brief CPMS introduction explaining the requirements regarding logging cases. Prof Cross and Prof Alexis Arzimanoglou described the issues around widening the network. They also introduced the new EpiCARE affiliated centres and gave information about the upcoming new ERN call for new centres.
In the afternoon Prof Ryvlin explained how EpiCARE is connected with the Human Brain Project and the benefits of the Medical Informatics Platform, which will be available for all EpiCARE centres.
Prof Guerrini talked about his new initiative to set up an ‘Undiagnosed and rare genetic epilepsies’ working group within EpiCARE as well as setting up a dedicated website for information exchange to aid the project’s work. The dedicated web platform would allow the working group to reach out to larger research initiatives and gather specific cohorts for functional studies and applications for personalised trials (C4C).
After lunch, the assembly discussed issues raised by EpiCARE members, such as the need for guidelines for laser ablation surgery, training courses and clinical trial readiness.
The 2nd Annual EpiCARE meeting was attended by 68 delegates from 25 EpiCARE centres, two new affiliated centres and three further organisations we work with. Five patient organisations were represented through their patient representatives.
You find the official photos of the event on our Facebook page:
You find the detailed program here.
You can download the presentations from Saturday, 23 February 2019 below.
- Coordination update
- WP2 – Laboratory diagnostics
- WP3 – Neuroimaging
- WP4 – Neurophysiology
- WP5 – Neuropsychology
- WP6 – Neuropathology
- WP7 – Targeted Medical Therapies
- WP8 – Epilepsy Surgery
- WP9 – Neonatal Seizures
- WP10 – Dietary Therapies
- WPI – Registry
- WPII – Guidelines
- WPIII- Education and Training
- WPIV – Research
- WPV – Clinical Trials
- CPMS Introduction
- Referral pathway
- Continuous performance monitoring introduction
- Undiagnosed and rare genetic epilepsies working group information
- Presentation of the patient advocacy group
