FH patients insufficiently treated, reveals global FH registry

News - Sep. 9, 2019

The first patient data from the European Atherosclerosis Society Familial Hypercholesterolaemia Studies Collaboration (FHSC) highlight the need for more intensive therapy to reduce LDL-C, in people with FH. The FHSC is the only global registry on 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% had LDL-C levels at entry that were above European Society of Cardiology/European Atherosclerosis Society (ESC/EAS) recommended targets for people with FH. The findings were reported during the ESC Congress, 31 August-4 September, Paris, France.

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 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.

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.

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. 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.

Source: press release EAS society September 2, 2019

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