GENERAL INFORMATION
Rare cardiovascular diseases are largely inherited heart conditions linked predominantly to the sudden juvenile death syndrome. Greece is a natural reservoir of inherited and rare diseases due to its extended insular space which contributed to the survival of closed societies for extended periods of time. Extensive screenings of mostly young people who participate in organized sports activities and/or local, national and international championships are currently conducted throughout Greece. However, this constitutes a form of discrimination among the young population since sportspersons are not the only ones affected by pathologies causing sudden juvenile death. Sudden death in young people is primarily caused by inherited cardiovascular diseases. These diseases are at the core of the sudden juvenile death syndrome. Hence, preventing sudden juvenile death is linked to a country’s ability to promptly diagnose and treat inherited cardiovascular diseases. This has provided just the necessary impetus for the establishment of a National Network for the Study of Congenital and Rare Heart Diseases in every country. The Network will ensure equal treatment of all population for prevention of sudden death syndrome and treatment of inherited cardiovascular diseases. Moreover, in addition to its direct focus on the core causes of sudden juvenile death in each country using advances in the genetic and multi-parameter approaches to disease, it will establish a national data bank comprising clinical-genetic correlations for the diseases concerned, with a view to providing the basis for an individualized approach of cardiovascular disease in the immediate future. The national data bank will be based on two nationwide surveys on: a) inherited cardiovascular diseases; and b) sudden juvenile death.
The Hellenic Research Network for the Genetics of Human Cardiovascular Diseases and the Prevention of Sudden Juvenile Death is funded with 2,705,400.00 EUR. Its 18 participating entities are the following:
- Onassis Cardiac Surgery Center
- National and Kapodistrian University of Athens, School of Medicine, Laboratory of Toxicology and Forensic Medicine
- AHEPA University General Hospital of Thessaloniki (clinical unit)
- Institute of Applied Biosciences / Centre for Research and Technology, Hellas (CERTH)
- University General Hospital of Heraklion (PAGNI), Cardiology Department
- Institute of Molecular Biology and Biotechnology / Foundation for Research and Technology – Hellas (FORTH)
- Institute of Computer Science / Foundation for Research and Technology – Hellas (FORTH)
- “Hippokrateion” General Hospital (clinical department), National and Kapodistrian University of Athens
- “Evangelismos” General Hospital of Athens (clinical department)
- Biomedical Research Foundation / Academy of Athens
- “Hippokrateion” General Hospital (clinical department), Aristotle University of Thessaloniki
- Aristotle University of Thessaloniki, Laboratory of Toxicology and Forensic Medicine
- University of Patras Cardiology Department
- University of Ioannina 1st Cardiology Department
- University of Ioannina 2st Cardiology Department
- University of Thrace Cardiology Department
- University of Thessaly Cardiology Department
- “Attikon” University General Hospital 2nd Cardiology Department, National and Kapodistrian University of Athens
The Network’s ultimate aim, in collaboration with the Ministry of Health, is to provide access to Personalized Medicine clinical applications for all Greek citizens via the Public Health System.