European Atherosclerosis Society Familial Hypercholesterolaemia Studies Collaboration

What this Trial Is About

Familial hypercholesterolemia (FH) is a common genetic disorder that causes very high levels of low-density lipoprotein cholesterol (LDL-C), increasing the risk of early cardiovascular disease if left untreated. Despite the potential to prevent harmful outcomes through early diagnosis and treatment, FH remains largely underdiagnosed and undertreated worldwide. This research is part of a global initiative led by the European Atherosclerosis Society (EAS) to gather and analyze data on FH from many countries, aiming to improve understanding and care worldwide. The study collects anonymized, secondary data from multiple national and regional registries across nearly 60 countries, combining these into a single global FHSC Registry. This large database currently holds over 60,000 cases and continues to grow, allowing researchers to observe and analyze various aspects of FH, including diagnosis, management, and outcomes. There are no investigational treatments; the study is observational and focuses on gathering and harmonizing data from existing sources. Participants include adults and children with heterozygous or homozygous FH, as well as unaffected relatives of FH individuals who have undergone screening. Data collected include diagnosis details, lipid levels, vascular risk factors, management changes over time, and cardiovascular outcomes, with an average follow-up of 5 years. This observational study monitors these factors to support research that may guide clinical guidelines and healthcare policies for FH globally.

EAS Familial Hypercholesterolaemia Studies Collaboration