This website uses cookies to store information on your computer. Some of these cookies are used for visitor analysis, others are essential to making our site function properly and improve the user experience. By using this site, you consent to the placement of these cookies. Click Accept to consent and dismiss this message or Deny to leave this website. Read our Privacy Statement for more.
Sign In   |   Register
News: FHSC

Putting FH on the public health agenda - update from the EAS-FH Studies Collaboration

Monday 18 September 2017   (0 Comments)
Share |

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 registry towards a better understanding of FH

The European Atherosclerosis Society FH Studies Collaboration (EAS-FHSC) is a consortium 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 network keeps growing, counting to date over 65 countries worldwide, and constitutes the first global initiative that, through joint international efforts, is working towards a better understanding of FH to ultimately inform and impact the guidelines on FH management.

The intital call to action for the FHSC is described in an article published in the Atherosclerosis journal.
Familial Hypercholesterolaemia: A global call to arms, Vallejo-Vaz, Antonio J. et al., Atherosclerosis.

The FHSC Rationale and Methods paper, published last year, describes the rationale, design and methods of the EAS-FHSC project and registry. The article is available Open Access:
EAS FHSC Investigators; Pooling and expanding registries of familial hypercholesterolaemia to assess gaps in care and improve disease management and outcomes: Rationale and design of the global EAS Familial Hypercholesterolaemia Studies Collaboration. Atherosclerosis Supplements 2016;22:1-32.

Prague, Czech Republic, on April 26th, 2017. The meeting brought together over 70 national lead investigators involved in EAS FHSC, and constituted a forum not only for discussion on FHSC developments, but also for FH initiatives carried out by individual investigators in local/regional sites.

EAS Consensus publications & related information on FH >>

EAS FH Studies Collaboration >>

About the registry >>

Membership Software Powered by YourMembership  ::  Legal