About the FH Studies Collaboration

Familial Hypercholesterolaemia (FH) represents a major global health problem because, despite being very common, it is widely underdiagnosed, undertreated and, as a result often fatal. The consequences of FH in the form of premature atherosclerosis and cardiovascular events are potentially preventable, but require effective initiatives and policies to address the current issues and reduce the burden of disease. 

To address these issues, EAS FH Studies Collaboration (FHSC) has since 2015 collected data from FH investigators from all over the world. The data is pooled, harmonised and analysed to give the investigators a better understanding of FH. EAS FHSC raises awareness of the disease and encourages the development of programmes, initiatives and policies specifically focused on FH, by joining efforts from healthcare providers, patient organizations, policy makers and the entire medical community. A "Call to Action" published in Atherosclerosis at the outset of the project, provides a framework for the extensive work now being undertaken to reduce the impact of FH and the global burden of the disease. 1

EAS FHSC objectives

By establishing the first global Registry of patients with FH, to:

  1. Generate robust information to accurately and reliably investigate the burden of both homozygous and heterozygous FH, how FH is detected and managed, and the clinical consequences of current practices on delivery of care and outcomes.
  2. Disseminate the information gained from the registry to an international audience including physicians, other healthcare professionals, policy-makers and patient organizations.
  3. Consolidate a network of investigators interested in FH, through which collaborative research and networking on FH can be conducted on a large-scale.

A Methods paper was published in Atherosclerosis in 2016, describing the rationale, the design and the methods of the EAS-FHSC project and registry.2

About the EAS FHSC Network

EAS-FHSC is a global initiative led by Prof Kausik Ray (Imperial College London, UK) and 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).

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.

To ensure smooth operations within the network, the EAS FHSC collaboration is supported by a number of FH Lead Investigators for their respective countries. Currently, ca. 70 countries and more than 80 Lead investigators are involved. An overview of the current situation related to FH in the involved country has been presented in the FHSC overview article, the first global survey on FH status, published last year in Atherosclerosis.3, 4

More recently, presentations of analyses of the registry data have been made at a late-breaking science session at ESC 2019 Paris. The first data analyses have been published in The Lancet in a major new publication.5 These and subsequent analyses will inform scientific discussion about effective global action for early detection of FH, and effective management and treatment of FH patients.

Read the articles

  1. Vallejo-Vaz, Antonio J. et al. Familial Hypercholesterolaemia: A global call to arms.  Atherosclerosis. http://dx.doi.org/10.1016/j.atherosclerosis.2015.09.021
  2. 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
  3. Overview of the current status of Familial Hypercholesterolaemia care in over 60 countries – the EAS Familial Hypercholesterolaemia Studies Collaboration (FHSC) (Free text)
  4. Improving FH care – first survey data from EAS FHSC (Commentary on “Overview of the current status of FH care in over 60 countries)
  5. Global perspective of familial hypercholesterolaemia: a cross-sectional study from the EAS Familial Hypercholesterolaemia Studies Collaboration (FHSC).The Lancet 2021: https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(21)01122-3/fulltext#%20
  6. Familial hypercholesterolaemia in children and adolescents from 48 countries: a cross-sectional study from the EAS Familial Hypercholesterolaemia Studies Collaboration (FHSC). The Lancet 2023: https://www.sciencedirect.com/science/article/pii/S0140673623018421