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News: FHSC

FHSC reports at ESC Congress Paris 2019

Monday 2 September 2019  
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Press release 08:30 CET, Monday 2nd September 2019

Familial Hypercholesterolaemia Studies Collaboration, a global registry of over 61,000 people with this common inherited high cholesterol disorder, reports at European Society of Cardiology Congress 2019

The first patient data from the European Atherosclerosis Society Familial Hypercholesterolaemia Studies Collaboration (FHSC), the only global registry on FH, highlight the need for more intensive therapy to reduce low-density lipoprotein cholesterol (LDL C), ‘bad cholesterol‘, in people with FH. Among 42,000 adults with heterozygous FH, only about half received a statin at the time of entry to the registry. Of people on a statin, over 85 per cent had LDL-C levels at entry that were above European Society of Cardiology/European Atherosclerosis Society (ESC/EAS) recommended targets for people with FH.1 The findings were reported during the ESC Congress, 31 August-4 September, Paris, France.

FH is one of the most common inherited conditions affecting about one in 200 people.2 FH is a global challenge because few patients are identified world-wide, and mostly too late, usually when they are in their 40s and they already have heart disease.

The FHSC global registry currently includes over 61,000 people, with almost 9,000 children, in 69 countries. Professor Kausik K. Ray (Imperial College, London, UK) and Professor Alberico L. Catapano (University of Milan, Italy) are co-Chairs of the EAS FHSC Registry. The mission of the 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 common lipid disorder.3

Professor Kausik K. Ray said: ‘These first ‘big data’ from this unique global initiative underline the major problem of undertreatment of FH, first brought to the attention of the clinical community by an EAS Consensus Panel Statement in 2013.4 Five years later it is clear that there is still much to do to improve FH care. Early heart attack in people with FH is preventable. As clinicians, we owe it to our patients to strive for optimal LDL-C management to prevent heart attacks and save lives.’

Key to this is screening of relatives after a person is diagnosed with FH. This would allow new FH cases to be identified earlier, when they have lower LDL-C levels and are less likely to have heart disease. ’Our data support the case for screening relatives when a first person in a family is diagnosed with FH –also called an index case. In this way new FH cases can be identified and managed earlier, when they have lower levels of LDL-C. This is a great opportunity for preventing future cardiovascular events,’ commented Professor Kausik Ray.

These findings from the EAS FHSC Registry were discussed during the ESC Congress 2019, 31 August to 4 September, Paris, France:

Late Breaking Science in Prevention 1 - Risk Factors and Prevention 08:30 - 09:40, Monday 2 September. The EAS Familial Hypercholesterolaemia Studies Collaboration (FHSC) global registry: analyses from over 55,000 cases and 68 countries. Vallejo-Vaz AJ on behalf of EAS FHSC consortium of investigators. Abstract 2974.


Professor Kausik K. Ray, EAS FHSC Lead; Imperial Centre for Cardiovascular Disease Prevention, School of Public Health, Imperial College London, London, UK.
Electronic address:
or via EAS OFFICE: Email:

Notes for editors

About the EAS FH Studies Collaboration (EAS FHSC)
The FHSC was launched at EAS Congress Glasgow in 2015 with the mission to empower the medical and global community to seek change in how FH is detected and managed. The aim is to promote early diagnosis and more effective treatment of this condition.

EAS-FHSC is a global initiative led by Prof Kausik Ray (Imperial College London, UK), an executive committee comprising Prof Alberico L. Catapano (Italy); Dr. Tomas Freiberger (Czech Republic); Prof John Kastelein, Prof G.Kees Hovingh (Netherlands); Prof Pedro Mata (Spain); Dr Handrean Soran (UK); Prof Gerald Watts (Australia); Prof Frederick Raal (South Africa) and Prof Raul Santos (Brazil), and a Steering Committee comprising all FHSC National Lead Investigators.

The Coordinating Centre for the EAS FHSC is based at the Imperial Centre for Cardiovascular Disease Prevention (ICCP), School of Public Health, Imperial College London, UK.

For further information:
Follow us on twitter #fhscglobalregistry


  1. Mach F, et al. 2019 ESC/EAS Guidelines for the management of dyslipidaemias: lipid modification to reduce cardiovascular risk. Eur Heart J 2019;doi:10.1093/eurheartj/ehz455.
  2. Benn M, et al. Mutations causative of familial hypercholesterolaemia: screening of 98 098 individuals from the Copenhagen General Population Study estimated a prevalence of 1 in 217. Eur Heart J 2016;37:1384-94.
  3. Vallejo-Vaz AJ, et al. Familial hypercholesterolaemia: A global call to arms. Atherosclerosis 2015;243:257-9.
  4. Nordestgaard BG, et al; European Atherosclerosis Society Consensus Panel. Familial hypercholesterolaemia is underdiagnosed and undertreated in the general population: guidance for clinicians to prevent coronary heart disease: consensus statement of the European Atherosclerosis Society. Eur Heart J 2013;34:3478-90a.


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