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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
Imperial Coll London, England.
Imperial Coll London, England; Nanyang Technology University, Singapore.
St Georges University of London, England.
St Georges University of London, England.
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2016 (English)In: Atherosclerosis Supplements, ISSN 1567-5688, E-ISSN 1878-5050, Vol. 22Article in journal (Refereed) Published
Abstract [en]

Background: The potential for global collaborations to better inform public health policy regarding major non-hypercholesterolaemia (FH), a common genetic disorder associated with premature cardiovascular disease, is yet to be reliably ascertained using similar approaches. The European Atherosclerosis Society FH Studies Collaboration (EAS FHSC) is a new initiative of international stakeholders which will help establish a global FH registry to generate large-scale, robust data on the burden of FH worldwide. Methods: The EAS FHSC will maximise the potential exploitation of currently available and future FH data (retrospective and prospective) by bringing together regional/national/international data sources with access to individuals with a clinical and/or genetic diagnosis of heterozygous or homozygous FH. A novel bespoke electronic platform and FH Data Warehouse will be developed to allow secure data sharing, validation, cleaning, pooling, harmonisation and analysis irrespective of the source or format. Standard statistical procedures will allow us to investigate cross-sectional associations, patterns of real-world practice, trends over time, and analyse risk and outcomes (e.g. cardiovascular outcomes, all-cause death), accounting for potential confounders and subgroup effects. Conclusions: The EAS FHSC represents an excellent opportunity to integrate individual efforts across the world to tackle the global burden of FH. The information garnered from the registry will help reduce gaps in knowledge, inform best practices, assist in clinical trials design, support clinical guidelines and policies development, and ultimately improve the care of FH patients. (C) 2016 Elsevier Ireland Ltd.

Place, publisher, year, edition, pages
ELSEVIER IRELAND LTD , 2016. Vol. 22
Keyword [en]
Familial hypercholesterolaemia; LDL-Cholesterol; Cardiovascular disease; Registry; Study design; Familial Hypercholesterolaemia Studies Collaboration
National Category
Cardiac and Cardiovascular Systems
Identifiers
URN: urn:nbn:se:liu:diva-134993DOI: 10.1016/j.atherosclerosissup.2016.10.001ISI: 000393031600001PubMedID: 27939304OAI: oai:DiVA.org:liu-134993DiVA: diva2:1078793
Note

Funding Agencies|Pfizer Independent Grant for Learning Change [16157823]; Amgen; MSD; Sanofi-Aventis; Latvian State Research Programme BIOMEDICINE; Czech Republic [MZ CR AZV 15-28277A, 16-29084A]

Available from: 2017-03-06 Created: 2017-03-06 Last updated: 2017-11-29

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Nilsson, Lennart
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Division of Cardiovascular MedicineFaculty of Medicine and Health SciencesDepartment of Cardiology in Linköping
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