EpiCARE General Assembly February 2020

14th and 15th of February, Lyon, France

Draft Agenda EpiCARE General Assembly February 2020

Thursday February 13th

Arrival of the members of the Steering Committee. Diner at 20H30.

Friday February 14th

9H00-11H30 Meeting of the Steering Committee (Agenda TBD)

12h-15HWorkshops (including light buffet lunch)

  • WORKSHOP 1: Patient Care Pathways

(A) Brief presentation of the questionnaire on national health care pathways for early referral of PWE already prepared by the ad hoc Task Force (Reetta and Masa)

(B) Division is small working groups

(a) Adapt the questionnaire to countries with official national networks;

(b) Adapt the questionnaire to countries without official national networks;

(c) How to ameliorate the contribution of EpiCARE experts to the CPMs discussions (who to invite; how to diffuse the information; etc).

(d) Patient Leaflets

(C) Synthesis to be presented to the General Assembly.

  • WORKSHOP 2: Guidelines_ Education_Training_Dissemination

(WPs 11 & 13 & 14 + INEA 2018 Grant)

A) Guideline Development Project and pilot survey (20 mn)

B) Education and Training projects (10mn)

C) Breakdown into small working groups (30mn)

  • Group 1 – Best dissemination pathways of guidelines and educational material (to patient associations and HCP non-members of EpiCARE).

  • Group 2 – Implementation of guidelines (and further work on the content of the survey).

  • Group 3 – Adherence to guidelines.

  • Group 4 – Priority topics for educational webinars and list of tasks 2020-2022.

D) Presentation from Groups 1-4, discussion and synthesis to be presented to the General Assembly

15H30 to 17H30 & 17H30 to 19H30

1H45 sessions of Working Packages (not more than 4 in parallel to facilitate presence of members), focusing on deliverables and dissemination (within and beyond EPiCARE)

 

15H30 to 17H30

17H30 to 19H30

Salon ALSACE

WP8 SURGERY

WP 7&15 TARGETED MEDICAL

THERAPIES PROJECTS & RESEARCH

Salon BOURGOGNE

WP5 NEUROPSYCHOLOGY

WP 4 NEUROPHYSIOLOGY

Salon BRETAGNE

WP10 DIETARY TREATMENT

WP 9 NEONATAL

Salon CHAMPAGNE

WP16 CLINICAL TRIALS

WP2 ORPHANET CODES

Salon LORRAINE

CPMS TRAINING at request

CPMS TRAINING at request

Downtown Networking dinner ERN EpiCARE

Saturday February 15thGENERAL ASSEMBLY

8H30:

  • Welcomes and Report from 2019 Coordinators meetings and DG SANTE

  • Affiliated Partners presentations

9H00: What is expected from existing ERNs to facilitate sustainability of after 2022

Invited Conference: Mr Enrique TEROL, DG SANTE

09H30-10H45:

  • Synthesis of ongoing and future activities of EpiCARE WPs

Judit GERMUSKA, Project Manager

(the set of slides will be sent to all participants before the meeting)

  • Synthesis Workshop 2 on Education, Training and Guidelines (Eugen & Alexis)

  • Questions and Answers on EpiCARE activities (All participants; Answers from WP leads)

10H45 Coffee Break & Networking

11H15-12H45:RESEARCH and ERN EpiCARE (Lead: WPs 7-15-16).

Discussion on grant applications and/or trials presented by EpiCARE members to national or international calls and establishment of collaborations

EPICARE DATA SHARING PLATFORM FOR RARE GENETIC EPILEPSIES (Renzo and Davide)

Clinical Trials & EJP RD (Marta del Alamo)

Other EJP RD Calls (Eleonora Passeri)

Human Brain Project calls (A. Schulze-Bonhage & P. Ryvlin)

Project “Use of real-world data to advance research” (European Brain Council/ H. Cross and P. Ryvlin)

12H45-14H00 BUFFET LUNCH

14H00-14H15: Focusing on CPMS modalities and participation

Nicola Openshaw-Lawrence (Operational Helpdesk Coordinator/Data Manager for EpiCARE)

14H15-15H30: Patient Care Pathways and ePAG activities

– Conclusions of Workshop 1 on Patient Care Pathways (Reetta & Masa)

– Patient Journeys, Patient unmet needs and Suggestions on concrete actions to be taken

(Isabella & Alisson on behalf of ePAG)

Collaboration with national patient associations

– Questions & Answers

15H30-16H30:

Other issues

END OF the 2020 ERN EpiCARE ANNUAL MEETING