ANLP research Group MIRACL Laboratory University of Sfax ...
Strengthenning the Sfax UniversityExpertise for Diagnosis ...
Transcript of Strengthenning the Sfax UniversityExpertise for Diagnosis ...
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Strengthenning the Sfax University Expertise for Diagnosis and Management of Epileptic
Encephalopathies
Kickoff meeting –octobre 25th , 2019 [email protected]
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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
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Outline
• Why a Twinning project about epileptic encephalopathies?
• Concept and Methodology of SEED
• Expected impacts of SEED
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Why a Twinning project?
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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
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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
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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
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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
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• 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
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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
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Concept and methodology of SEED
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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
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Indicators
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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
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Indicators
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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
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SWOT
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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
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Work packagesW
P7
: Ethics
req
uire
me
nts
SU UA SUnew
SU
AMU
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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
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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
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Definition of the training objectives and teaching tools
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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
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Train the trainers on clinical and EEG diagnosis
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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
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Train the trainers on genetic diagnosis
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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
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Knowledge transfer and sustainability phase
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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
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Work package 6 SU M1-M36
• Mentoring of ESRs
• Additional networking and training activities dedicated to ESRs
ESR involvement of twinning excercice
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Work package7
• Informed consent forms and information sheets
• Personal Data protection/ Data protection officer
• Benefit-sharing arrangements
Ethics requirements
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Expected impacts
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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.
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Indicators
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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
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Networking
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SEED
Government
National
Institutions
Financial
facilities
Young
people
Stakeholders
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Merci pour votre attention
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