19 September 2016

Putting FH on the public health agenda – EAS-FH Studies Collaboration

Familial Hypercholesterolaemia (FH) is a common genetic disorder associated with premature cardiovascular disease. Many people have FH and do not know it, and will perhaps not know it until they suffer a premature heart attack. There is a global need to initiate programmes to find and treat persons with FH. The tools are there to be used, the costs are low relative to the number of lives saved, and the potential health benefits are huge.

September 24 is FH-awareness day. All this week, in a series of newsletters, EAS highlights activities that are putting FH on the public health agenda. In this newsletter, we focus on why action on FH is needed, and the aims of the EAS-FH Studies Collaboration.

Why is action on FH needed?

FH – a common hereditary cause of premature cardiovascular disease

The hallmark of Familial Hypercholesterolaemia (FH) is high LDL-cholesterol. The disease is carried by one in 200–300 persons in the heterozygous form — that is to say, about 2 million people in Europe carry FH. It is present from early childhood, but without noticeable symptoms until the third or fourth decade in life, when heart disease will appear. If untreated, 50% of men with FH suffer a heart attack before they are 50 years old, and women before they reach the age of 55. FH is a ticking bomb that, if untreated, will cause cardiovascular disease or death.

FH is underdiagnosed

When detected, FH can be treated, but there are few countries in Europe where is FH systematically sought and diagnosed. As FH runs in families — a child of a parent with FH has a 50% chance of inheriting the disorder — when one person is diagnosed, a systematic search of their relatives will identify other family members carrying FH. The tool to detect the patients is available and is easily applicable to everyday clinical practice.

FH can be treated

Treatment with statins will bring many patients’ cholesterol levels down to “normal”. If diagnosed early, treatment can give persons with FH a normal life expectancy. Even when FH is diagnosed later in life, treatment will dramatically improve life expectancy. Yet, in most European countries less than 10% of FH patients are treated.

EAS-FHSC – a global FH registry to establish large-scale data on the public health impact of FH

The European Atherosclerosis Society FH Studies Collaboration (EAS-FHSC) is a consortia of international stakeholders working together to establish a global FH registry. Its purpose is to generate large-scale, robust data on the burden of FH worldwide, and establish the true public health impact of FH.

The EAS-FHSC registry can collect currently available as well as future FH data (retrospective and prospective) in a novel bespoke electronic platform and FH Data Warehouse, which will allow secure data sharing, validation, cleaning, pooling, harmonisation and analysis, irrespective of the data source or format. Data on individuals with a clinical and/or genetic diagnosis of heterozygous or homozygous FH are being brought together from regional, national and international data sources. Standard statistical procedures allow us to investigate cross-sectional associations, patterns of real-world practice, trends over time, and analyse risk and outcomes.

The information garnered from the registry will reduce gaps in knowledge, inform best practices, assist in clinical trials design, support clinical guidelines and policy development, and ultimately improve the care of FH patients.

EAS-FHSC will publish information about the rationale and design of the registry in a forthcoming issue of Atherosclerosis.


EAS Consensus publications & related information on FH >>

EAS FH Studies Collaboration >>

Find out more

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