An insight into familial hypercholesterolemia in Greece: rationale and design of the Hellenic Familial Hypercholesterolemia Registry (HELLAS-FH).

Abstract

Familial hypercholesterolemia (FH) is the most common metabolic genetic disorder. It is estimated that around 13 million people worldwide have FH. At the same time, only 25% of FH patients have been diagnosed. Moreover, these patients are often undertreated. The true prevalence of FH in Greece is unknown, but it is estimated that there are at least 40,000 FH patients nationwide pointing to a prevalence of 1:250. Patients with FH are at a high risk for cardiovascular events and death at an early age. Therefore, prompt detection of these patients is of pivotal importance in order to implement appropriate preventive measures at a young age. Patient registries are a powerful tool for recording and monitoring a disease and promoting clinical practices, thus contributing to improved outcomes and reduction of healthcare costs. National registries of FH patients have been a success in the Netherlands, Spain and Wales. As Greece did not have a national FH registry, the Hellenic Atherosclerosis Society has organized, established and funded the Hellenic Familial Hypercholesterolemia (HELLAS-FH) national registry in order to promote a better understanding of FH in our country.