Sudden death: managing the family, the role of genetics

There is clear evidence suggesting that genetics play a role in some cases of SCD and that genetic testing can irrefutably identify those individuals at risk for a disease, although the simple availability of genetic tests is not sufficient to guarantee any health benefits. Genetic results are complex and require unambiguous interpretation of their clinical implications. These results should be assessed initially in specialised centres with knowledge of their value and limitations. It is therefore necessary to develop a comprehensive model which will prioritise information and multidisciplinary communication, supported by at least three main pillars: 1. Better information, directed towards improving awareness of the disease in the community. 2. Improved access to medical care, organised around better communication pathways between specialists, primary care physicians and families. 3. Thorough diagnostic evaluation, including early genotyping, to improve the comprehensive clinical examination in SCD syndromes for rapid detection of individuals at risk.