Description

Rare heart diseases are typically hereditary and are predominantly associated with the phenomenon of sudden youthful death.

Due to its island regions, which functioned as closed societies for long periods, our country is a natural park for hereditary and rare diseases.

Sudden death in young people is primarily caused by hereditary cardiovascular diseases. These conditions form the core of sudden youthful death.

Therefore, the prevention of sudden youthful death is linked to the ability to diagnose and treat hereditary cardiovascular diseases in every country.

Today, mass preventive screenings are conducted in our country, primarily targeting young people who systematically engage in sports and/or participate in championships (local/national/international).

This creates a discriminatory situation within the youth population, at a time when pathological causes of sudden youthful death do not only affect athletes.

The National Network of Precision Medicine in Cardiology and the Prevention of Sudden Youthful Death is a collaboration of public and university hospitals, as well as research institutions in the country, that began in July 2019.

It's funded by the General Secretariat for Research and Technology of the Ministry of Development and Investments, through the National Sector of the Public Investment Program of the GSRT, and has a two-year duration.

Goals

The application of Precision Medicine approaches for the treatment of hereditary heart diseases and sudden youthful death, which consists of:

✓ Promoting Precision Medicine in cardiology
✓ Preventing Sudden Youthful Death
✓ Studying hereditary cardiovascular diseases in Greece

The direct clinical and genetic screening of families with hereditary diseases and/or sudden youthful death, and the diagnosis with appropriate management of family members, especially those with silent and subclinical forms of these dangerous diseases, or relatives who are carriers of pathological genes but do not yet show any symptoms.

The management of hereditary cardiovascular diseases based on genetic testing in patients and their families.

Ensuring equality in the population's right to sudden death prevention and the treatment of hereditary cardiovascular diseases.

The creation of a National Information Bank with clinicogenetic correlations for these diseases, which will form the basis for a personalized approach to cardiac diseases in the near future.

Breaking the chain of heredity and interrupting the continuous transmission of these diseases to the next generation through preimplantation diagnosis before pregnancy.

The clinicogenetic correlations that emerge will depict the epidemiological map of the country for hereditary heart diseases and sudden youthful death. This will lead to the identification of areas with increased prevalence of such phenomena (hotspots – clusters of hereditary conditions, e.g., Naxos disease).

Targeted and effective interventions by the country's public healthcare system.

Implementation

Creation of a national registry for sudden deaths and for hereditary and rare heart diseases.

Screening of high-risk families identified through these two registries.

Creation of an epidemiological clinicogenetic map of the country for these diseases and sudden youthful death.

Effective management of the research findings with a focus on promoting Precision Medicine and utilizing the research for the benefit of Public Health.

Evolution of bioinformatics, the creation of biobanks, and the secure collection, analysis, storage, and distribution of data.

Support and evolution of the core and developed network units for Precision Medicine in cardiology that have been established and are operating within Greek territory.

Provision of free genetic testing to high-risk families.

Training of new doctors from the incubated network.