strengthenning the sfax universityexpertise for diagnosis

Strengthenning the Sfax University Expertise for Diagnosis and Management of Epileptic

Encephalopathies

Kickoff meeting –octobre 25th , 2019 [email protected]

The Project

• Project: 856592 — SEED

• Topic: WIDESPREAD-03-2018 — Twinning

• Type of action: Coordination and support action

• Ranking: 6/456

• EU grant amount: 799 916.25 EUR

• Project duration: 36 months

• Octobre 1th, 2019 to Septembre 30, 2022

USF AMU UA

351.172.68 262.143.57 186.600.00

Outline

• Why a Twinning project about epileptic encephalopathies?

• Concept and Methodology of SEED

• Expected impacts of SEED

Why a Twinning project?

Twinning project

• A Twinning project bring together:

• public sector expertise from EU member states and beneficiary countries

• In order to strengthen networking activities between:

• research institutions of the widening countries and internationally-leading

counterparts at EU

• Through the implementation of training and capacity building

activities:

• on a specific field research

The SEED project• We choose the field of epilepsy/Epileptic Encephalopathies:

• Epilepsy is the most common serious chronic neurological diseases

• Improvement in diagnostic tools in electro-clinical and genetic diagnosis

• Involvement of several stakeholders in the care of epilepsy

• Early clinical and genetic diagnosis: early management and reduces health costs

• The SEED project will:

• Strengthen the medical and technological capacity of SU in the use of innovative

technologies of SU in the field of EE

• Allow access to scientific excellence at international level for members of the SU

which will ultimately lead to a better integration into international networks

Specific actions of SEED

• Enhancement of the existing and the creation of new innovative

scientific and technical collaborations

• Creation of an experts' network for EE management centered at SU

• Increasing of awareness among the patients’ families through

targeted dissemination and communication activities

• Training of young researchers from SU to become trainers

• Development of a strategy to sustain network activity beyond the

project deadline

The SEED’s partners

• Sfax University (SU)- Tunisia:

NeuGen group

• Child neurology department and

RU- medical school:

• Pr Chahnez Charfi Triki, MD

• LR- LPCMC- Sfax Biotechnologic

Center :

• Pr Saber Masmoudi, PhD

• LR- LGMF- FSS:

• Pr Faiza Fakhfakh, PhD

• Aix-Marseille University (AMU)-

France

• Human Neurogenetics group of MMG

INSERM 1251:

• Dr Laurent Villard, PhD

• Pr Mathieu Mlih, MD

• University of Antwerp (UA)-Belgium

• Neurogenetics group :

• Pr Sarah Weckhuysen, MD

Twinning aims

• With the support of AMU and UA, and through the completion of

SEED activities, SU will be able:

• To significantly reduce networking gap

• To increase its ability to compete for international research funds

• To link further with stakeholders.

• SU will become the reference center for the clinic and genetic

diagnosis of EE in the MENA region

Concept and methodology of SEED

Why we need SEED project?

• The problems faced by research institutions

in SU:

• Lack of expertise for the clinical and genetic diagnosis

• Lack of scientific and technical training

• Low international visibility of Tunisian research teams.

• Conversely AMU and UA are facing a knowledge gap for autosomal recessive forms of EE

Indicators



in SU:

• Lack of expertise for the clinical and

genetic diagnosis


• Low international visibility of Tunisian

research teams.


Indicators



in SU:

• Lack of expertise for the clinical and

genetic diagnosis


• Low international visibility of Tunisian

research teams.


SEED’s objectives

• O1: Strengthening excellence of SU in the field of EE

• Improvement of clinical diagnostic and EEG technique and interpretation

• Enhancing the quality of EE phenotyping

• O2: Capacity building of SU in the field of NGS technologies

• Increasing technical and molecular capacity

• Improving interpretation of the results of NGS (variants)

• Enhancing highthroughput data management

• O3: Increase knowledge transfer and ensure the sustainability of the

project

Work packagesW

P7

: Ethics

req

uire

me

nts

SU UA SUnew

SU

AMU

Work package 1 SU M1-M36

• Contractual, Financial, IPR Management of the project and contacts

with EU

• Project Reporting

• Communication within the consortium and work plan monitoring

• Gender Action Plan

• Ethics issues monitoring

Management and coordination

Work package 2 UA M1-M36

• Definition of the training objectives and teaching tools:

• According to the level of trainee

• Training program: (E-learning)

• The Moodle platform of Sfax medical school

• Determination and monitoring of indicators:

• Through the OSCE method available in the Sfax medical school

Implementation and monitoring of training program

Definition of the training objectives and teaching tools

Work package 3 AMU M3-M15

• Training the trainers in clinical diagnosis of EE

• Training the trainers on child EEG

• Standardization and establishment of guidelines:

• for clinical and EEG approach

Building capacity in electro-clinical diagnosis of EE

Train the trainers on clinical and EEG diagnosis

Work package 4 AMU M3-M30

• Lectures and training on high-throughput DNA sequencing

• Training on bioinformatics

• Short term secondments to drive the design of conceptual data

modelling and the setup up of biological database

Building capacity in genetic diagnosis of EE through NGS

Train the trainers on genetic diagnosis


• SEED Website, social network

• Development and implementation

• of Dissemination and Communication Plan

• Knowledge transfer and sustanaibility

Knowledge transfer, dissemination and communication

Knowledge transfer and sustainability phase

Implication of all stakeholders

• Medical doctors• Health professionals• Scientists• Scientific association

• Private clinic• Computer companiesandbiotechnology

• Encourage private companies to invest in research and innovation

• simplify the financial management of international projects and modernize the management of research units and laboratories

• Bylaw for PWE• National Action Plan• Establishment of centers of references

• ARMNE• Associations AHMED d’aide aux enfants avec épilepsie


• Mentoring of ESRs

• Additional networking and training activities dedicated to ESRs

ESR involvement of twinning excercice

Work package7

• Informed consent forms and information sheets

• Personal Data protection/ Data protection officer

• Benefit-sharing arrangements

Ethics requirements

Expected impacts

Expected impacts

• To improve the skills and technical capacities of Tunisian doctors,

researchers, health professional on the diagnosis of EE

• Contribute to increase the research excellence of the coordinating

institution in the field of EE.

• Enhancing the reputation, attractiveness and networking channels of

the coordinating institution

• SU will definitely reach the criteria to become “specialized epilepsy

center” as determined by ILAE and to receive fellowships and

researchers from MENA region for training.

Indicators

Expected impacts

• Improved capability to compete successfully for national, EU and

internationally competitive research funding.

• Societal Impacts:

• The early identification of an epileptic syndrome improve the quality of life

(QOL) of patients and their families

• Economic impact:

• Decrease in the cost of health

• Policy impact:

• Set up and/or improvement of laws for patients with EE

• Action plan on epilepsy

Networking

SEED

Government

National

Institutions

Financial

facilities

Young

people

Stakeholders

Merci pour votre attention

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