EAS dedicated to address underdiagnosis and undertreatment of familial hypercholesterolaemia

The European Atherosclerosis Society has launched the global EAS FH Studies Collaboration (FHSC) at the EAS congress in Glasgow on Sunday March 22, which aims to address gaps in FH care and education worldwide. The mission of the EAS FHSC is to empower the medical and global community to seek change in how FH is detected and managed, so as to promote early diagnosis and more effective treatment of this condition.

Lead of the FHSC initiative, Professor Kausik Ray (Imperial College London, UK), said: ‘This is a unique opportunity for us to change the lives of millions of people around the world by working as one and leave a lasting benefit for future generations. Through international collaboration with stakeholders we aim to generate large scale robust data on how FH is detected, managed and the clinical consequences of current practice on outcomes. We will work with all stakeholders including patient’s organisations to ensure that state-of-the-art information is utilised to close gaps in knowledge and/or improve clinical practice for our FH patients.’

Professor Ray leads an International Steering Committee comprising Dr Handrean Soran (UK); Professor John Kastelein, Professor G.Kees Hovingh (Netherlands); Professor Pedro Mata (Spain); Professor Gerald Watts (Australia); Professor Frederick Raal (South Africa); Professor Raul Santos (Brazil); and EAS President Professor Alberico L. Catapano (Italy).
Currently, more than 30 countries have already agreed to take part.
 FH is one of the most common inherited conditions with new research showing that about one in 200 people have this condition.  If not detected and treated, FH causes premature heart disease due to the lifelong burden of high plasma levels of low-density lipoprotein (LDL) cholesterol. However, if people with FH are detected early and treated with effective cholesterol-lowering therapy, they can have a normal life.

Yet, worldwide, less than 1 per cent of FH patients are diagnosed. Even if patients are identified, most patients receive suboptimal treatment.

How will the FHSC achieve its mission?

The FHSC has two key objectives to address the gaps in FH care.

• First, to establish an international registry of observational studies on FH so as to gain in-depth understanding of the contemporary burden of both homozygous FH and heterozygous FH. Specifically this will investigate how patients are managed, treatments, barriers to care, long-term risks, impact of patient-specific and societal factors, gene-drug interactions and screening for FH.
• Second, to disseminate this information to an international audience of healthcare professionals, to improve awareness of the burden of FH, with the ultimate aims of developing a uniform, evidence-based standard of care, and at the same time, encouraging primary care physicians in particular to contribute actively to research.

At the official launch of the EAS FHSC on Sunday March 22 in Glasgow, a discussion was held on what can be learnt from the organisation of FH care in the UK, Asia Pacific Region and The Netherlands, and how this can be translated locally. During EAS Glasgow, for the first time the EAS is bringing together representatives of FH Patient Advocacy groups around the world, to learn from the successes and failures of patient advocacy in different countries, as well as how barriers to optimum FH care can be overcome.

Source

Press release European Atherosclerosis Society