Strengthenning the Sfax University Expertise for Diagnosis and Management of Epileptic Encephalopathies Kickoff meeting –octobre 25 th , 2019 [email protected]
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
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
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
SWOT
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
Work package 5 SU M1-M36
• 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
Work package 6 SU M1-M36
• 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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