FORTH participates in the National Network for Genetic Cardiovascular Diseases Study And Prevention Of Sudden Death In The Young On The Basis Of Precision Medicine
The Institute of Computer Science and the Institute of Molecular Biology and Biotechnology of the Foundation for Research and Technology (FORTH) participate in the “National Network for Genetic Cardiovascular Diseases Study And Prevention Of Sudden Death In The Young On The Basis Of Precision Medicine” that is funded by the General Secretariat for Research and Technology through public funds. The Network started its operation in July 2019 and has a duration of 2 years. The coordinator of the Network is the Onassis Cardiac Surgery Center. A number of important public hospitals and research centers participate the Network.
The purpose of the Network is to ensure that the country’s population has access to clinical protocols and treatments based on genetic approaches to prevent sudden death and to treat hereditary cardiovascular diseases. One of the results of the Network will be a Data Bank with clinical family correlations for hereditary diseases which will form the basis for a personalized approach to treat heart diseases in the near future. The Data Bank will store (a) patients with hereditary heart diseases (b) cases of juvenile sudden death and (c) anonymous genomic data.
The Network is based on the existing operational structures, which are in Athens, Thessaloniki and Crete and will be gradually spread throughout Greece. The data collected by the Network will be used for:
(a) the immediate clinical and genetic testing of families with inherited cardiac diseases and / or cases of juvenile sudden death,
(b) the diagnosis by appropriate treatment of members of these families who exhibit by silent and subclinical forms of these dangerous diseases or relatives who are carriers of pathological genes without manifesting any symptoms. We must note that sudden death may be the first manifestation of these diseases and even without warning signs.
(c) the breaking of the chain of inheritance chain and the stop of the transmission of these diseases to the next generation through pre-implantation diagnosis before pregnancy and
(d) the creation of the epidemiological map of the country for hereditary heart diseases and the sudden death of young people leading to the detection of areas with increased prevalence of such phenomena (nests of hereditary diseases, such as the Naxos disease).
This approach provides the ability to the country's public health system to plan targeted and effective interventions, as it is crucial to identify people with hereditary diseases and protect them before an unpleasant event occurs (sudden death - stroke - heart failure).
The Institute of Computer Science of the FORTH as the only participant of the Network in the field of Informatics, designs and implements three systems: the Genetic Cardiovascular Diseases Registry in which the patient clinical data are stored, Juvenile Sudden Death Registry in which the results of the necropsy / autopsy are recorded , and finally the Repository of the patients’, the deceased or even the families of the deceased anonymized genomic data. These data banks are installed in the secure infrastructure of GRnet (National Infrastructures for Research and Technology) to which authorized users (doctors, medical examiners, and laboratory geneticists of the Network have access). In https://sites.google.com/view/icardiacnet-services/ one can find a detailed description of the aforementioned systems.
The Institute of Molecular Biology and Biotechnology of FORTH has been active, for more than ten years, in the development of technologies and methods aimed at supporting and consolidating personalized and precision medicine, through a vigorous monitoring of genomics technological advancements, with the installation and operation of cutting edge platforms and infrastructures in the field of Genomics analysis and having trained highly qualified research staff. As part of the Network, IMBB will participate with targeted genetic analysis of clinical samples of families with hereditary diseases and / or sudden juvenile death using Next Generation Sequencing methods.
Responsible for the above activity on behalf of the Institute of Molecular Biology and Biotechnology is the President of FORTH and Professor of the Medical School of the University of Crete, Nektarios Tavernarakis.
Responsible for the above activity on behalf of the Institute of Computer Science is Mrs. Irini Fundulaki, Principal Researcher of the FORTH.