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Euro-Mediterranean Network for Genetic Services

Final Report Summary - MEDGENET (Euro-Mediterranean Network for Genetic Services)

MEDGENET was a project intended to expand the human expertise in clinical genetics and cancer genetics in our Mediterranean Partners Countries (MPCs), through the transfer of knowledge and technology between the northern and eastern/southern rims of the Mediterranean which share a common burden of genetics diseases.

The MEDGENET project has to be considered a great success. It has created persistent links and relationships with the structures in this area. There were a number of occasions where the partners in far off eastern and southern Mediterranean countries reiterated their appeals for stronger integration into European Health initiatives. As an anecdote we put forward the case of the Universitè S. Joseph, in Beirut apologised for being a week late transmitting the programme for the conference which would have been held several months later (eventually held on 28 October 2008), as there was a war in their country and part of the hospital had been damaged. They wanted to be sure that as this was part of a deliverable we would be not be abandoning them and ensure our interest in their institute. Of course this only strengthened the commitment of the other consortium members as a whole. This anecdote describes the commitment of the partners in general and is an example of the group environment that was formed during the project, that up to today persists. This persistence of a 'group' identity is our major asset and gives us high expectations for the future of our network.

The network will grow and continue to bring in new members thanks to interactions that are now common place. The geneticists in the eastern and southern Mediterranean countries commonly invite European geneticists to speak and participate in their events while vice versa these geneticists and their students are commonly attending courses in Italy. In fact the Hôpital Charles Nicolle, Cairo University, and Chronic Care Centre in Lebanon have all sent and students to the advanced medical genetics courses held in Ronzano and in Bertinoro, Italy. This is a central component of our positive outlook for the future in that these students have returned to their home institutions and are acting as ambassadors for the genetics-training curriculum in their countries. We have in fact registered several ongoing discuss ions regarding courses and curriculum which in fact were not part of the project itself. We assume this activity will expand, solidifying the relationships that have grown thanks to MEDGENET.

Additionally the project foresaw and implemented remote training. It set up and equipped lecture halls so that participants in these countries could follow the courses held in Italy. It must be mentioned that this practice is continuing even now after the project and that centers including Centre Hospitalo - Université Mustapha and the Cyprus Institute of Neurology and Genetics have requested permanent relationships and the possibility to follow all of the courses in the future. The lead partner EGF provided five e-learning courses (available on the MEDGENET web site) and many of the partners have requested access to additional material of the same nature. In fact EGF has been collecting multimedia material from genetics courses for several years and has a wealth of materials on line. Partners such as the Cyprus Institute of Neurology and Genetics and the National Centre for Diabetes and Genetics Disorders in Jordan have asked for access to EGF's past courseware. It is expected that this cross- fertilisation can only continue and grow now that the partners know of each other's existence and competencies.

Tele-counselling which was a focal part of the project phase has now become a reality. Although there is no official sanction from national or institutional management we have registered several cases where Geneticists in Universitè S. Joseph Lebanon, and the Hôpital Charles Nicolle have contacted Doctor Seri and Doctor Wischmeijer in the University of Bologna for advice on several occasions since the end of the project using the tele-counselling Database to exchange information. The outlook for the growing use of these systems is considered to be a given although legal and other regulations must be studied in further detail. In fact several projects in this area have already contacted or include partners in our project.

The area of tele-counselling is of great interest and our network has on the ground experience. Current projects are already referencing our work so we expect that future projects will also consider our activities. In particular within the consortium groups are forming for the promotion of some of the objectives in the projects. One example is the cooperation of between the Ministry of Health in Israel (and the Ono Accademic College, Kiryat Ono) and EGF and the FIRB - Fondo per gli Investimenti della Ricerca di Base in Italy. Other such synergies are imminent.

The two databases that were developed in the course of the project also represent a possible area to be used and exploited. Although legal issues regarding personal medical data and privacy issues may not allow all partners to use and leave medical information in this database data already exists and may be used for research purposes having clear regional data regarding genetic expression. Two possibilities exist. The first is that the databases can be used in future projects allowing the methodology and protocols to be used and the data to be enriched and expanded or a second possibility that the data itself could be interesting for ongoing research projects in the fields of dysmorphology and thalassaemia.

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