The H2020 Twinning projects aim to allow twinning between an institution in a third country and at least two recognized excellence laboratories and members of the European Union (EU) in order to improve scientific expertise and the network of the University of Sfax (SU). In this context, the SEED project “Strengthening the Sfax University Expertise for Diagnosis and Management of Epileptic Encephalopathies “was selected 6th among 460 projects submitted and will be funded from October 1, 2019 for a period of 3 years. It associates the University of Sfax (SU) in Tunisia, the University of Aix-Marseille (AMU) in France and the University of Antwerp (UA) in Belgium.
The project aims to develop the expertise of SU staff in clinical and genetic diagnosis using new technologies for the diagnosis of Epileptic Encephalopathies (EE). These are forms of epilepsy associated with severe cognitive impairment for which there is an important genetic basis. The Marseille laboratory and the Belgian laboratory are experts in this field. During the three years of its operation, the SEED program will also make it possible to offer staff exchanges and distance training activities, to create a network of experts based in Tunisia for the Middle East and North Africa zone and to sensitize families of patients through targeted outreach and communication activities. Meeting with Pr. Chahnez TRIKI, project coordinator, head of the child neurology department at Hédi Chaker University Hospital of Sfax.
How did you come up with the “SEED” project idea?
Answer : You should know that this is a story that began in 2005 when we started a research project federated with the Ministry of Higher Education and Scientific Research on the molecular diagnosis of intellectual disabilities. From this project, we noticed that we have a lot of intellectual disability with epilepsy. We therefore collected these data and found that epileptic encephalopathies represented 43% of patients who consulted the pediatric neurology department for epilepsy. Clinical diagnosis was made for these patients, but genetic diagnosis was not then possible. The Federated Research Project (PRF) made it possible to make some genetic diagnoses, but this was still insufficient. We started with the Molecular and Functional Genetics Laboratory (LGMF) at the Faculty of Sciences of Sfax under the direction of Pr. Faiza FAKHFAKH by studying the candidate gene such as the CDKL5 and ARX genes, and making the genetic diagnosis.
of a few patients but this technology was long. Thus in collaboration with the Laboratory of Medical Genetics and Dr. Ikhlas BEN AYED who was then doing his science thesis at the Laboratory of Molecular and Cellular Screening Processes (LPCMC) at the Center of Biotechnology of Sfax (CBS) under the direction of Pr. Saber MASMOUDI, we became aware of the availability of an NGS (Next Generation Sequencing) station at CBS which could constitute an opportunity to improve,within the framework of a project, the genetic diagnosis of epileptic encephalopathies (EE ).
Pr. Faiza FAKHFAKH, Pr. Saber MASMOUDI and I contacted the Marseille team with whom we have been collaborating for a few years who offered us this Twinning project to train Tunisian teams to improve the clinical and genetic diagnosis of EE.
It is therefore a series of works that relied on a local network called Neu-Gen which brought together the pediatric neurology service, the Molecular and Functional Genetics Laboratory (LGMF) of the Faculty of Sciences. of Sfax with Pr. Faiza FAKHFAKH, the Medical Genetics department, the Human Molecular Genetics Laboratory (LGMH) of the Faculty of Medicine of Sfax and the Laboratory of Molecular and Cellular Screening Processes (LPCMC) at the Center of Biotechnology of Sfax ( CBS) with Pr. Saber MASMOUDI. This SEED Project will give us the opportunity to expand this network with our European partners who are known to be leaders in the field. This project responds to a need for diagnosis and support.
How did you come up with the “SEED” project idea?
Answer: The Belgian partner came up with the Marseille team. The Marseille partner knew Pr. Sarah WECKHUYSEN who has experience of international projects on EEs and who coordinated the EuroEPINOMICS project (Study genetics of rare epilepsy syndromes with a focus on the EEs).
If I understood correctly, it was the Marseille partner who proposed the project but he handed over the coordination to you?
Answer: I think that Prof. Laurent VILLARD had a different version of what was classic. For him it was not give me the DNA and I will diagnose you; it is rather I will train you to have the skills to make the diagnosis yourself in Sfax. And this has always been our ultimate goal: all the work in genetic diagnosis published with Pr. Faiza FAKHFAKH was sfaxo-sfaxien. Our orientation was to set up the genetic diagnosis of EE in Sfax. And it is for this reason that we fully adhered to the Marseille proposal, which knew full well that in this type of project the beneficiary partner of the training would be the project coordinator.
How long did it take you to write the project? Has it been featured twice if I’m not mistaken? And the second time around, he excelled!
Answer : Yes absolutely. The writing of the project was very difficult because we are mostly used to writing research projects and this is another vision and it took us almost two months for our brain to assimilate things. This is a training project; you have to think and think about everything in terms of training and the ability to train people: in other words, it means strengthening and training other experts. We needed a lot of training seminars for Prof. FAKHFAKH, Prof. MASMOUDI and myself proposed by the Ministry of Higher Education and Scientific Research and the H2020 cell headed by Mrs. Olfa ZERIBI and Mrs. Amani CHARRAD, whom I thank very much. These seminars were free, led by high level people from Europe. Thanks to the French Embassy, I also had the chance to have a small budget to go to Marseille for a week to refine the project with the Protisvalor team specializing in drafting H2020 projects within the University. from Aix-Marseille. During this week, I came with a project and left with another!
The first time we submitted this project, we got a score of 12/15. We had good marks for the sustainability and excellence of the project, however, we had difficulty understanding the impact this project would have from a medical point of view, but also social and economic. The particularity of H2020 projects is that they have a vision that is not only medical, scientific, but global. Moreover, this project includes partners from the private sector and also patient associations, in this case the Ahmad association … The second time we submitted the project, we did not need a lot of training but rather a lot of concentration and there I took the opportunity to thank the pediatric neurology team with Pr. Fatma KAMMOUN, Dr. Sihem BEN NSIR and Dr. Wafa BOUCHAALA who freed me for two months to write this project with the Belgian and French partners. It’s like that through perseverance that we got a very good score of 14.5 / 15, with a ranking of 6 out of 456.