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

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Title: 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
Author(s): Vallejo-Vaz, A
Akram,, A
Seshasai,, R
Cole,, D
Watts, GF
Hovingh, GK
Kastelein, JJP
Mata, P
Raal, FJ
Santos, RD
Soran, H
Freiberger, T
Abifadel, M
Aguilar-Salinas, CA
Alnouri, F
Alonso, R
Al-Rasadi, K
Banach, M
Bogsrud, MP
Bourbon, M
Bruckert, E
Car, J
Ceska, R
Corral, P
Descamps, O
Dieplinger, H
Do, CT
Durst, R
Ezhov, MV
Fras, Z
Gaita, D
Gasper, JG
Genest, J
Harada-Shiba, M
Jiang, L
Kayikcioglu, M
Lam, CSP
Latkovskis, G
Laufs, U
Liberopoulos, E
Lin, J
Lin, N
Maher, V
Majano, N
Marais, AD
März, D
Mirrakhimov, E
Miserez, AR
Mitchenko, O
Nawawi, H
Nilsson, L
Nordestgaard, BG
Paragh, G
Petrulioniene, Z
Pojskic, B
Reiner, Z
Sahebkar, A
Santos, LE
Schunkert, H
Shehab, A
Slimane, MN
Stoll, M
Su, T
Susekov, A
Tilney, M
Tomlinson, B
Tselepis, AD
Vahnout, B
Widen, E
Yamashita, S
Catapano, AL
Ray, KK
Item Type: Journal Article
Abstract: Background: The potential for global collaborations to better inform public health policy regarding major non-communicable diseases has been successfully demonstrated by several large-scale international consortia. However, the true public health impact of familial 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.
Publication Date: 7-Dec-2016
Date of Acceptance: 8-Aug-2016
URI: http://hdl.handle.net/10044/1/42235
DOI: https://dx.doi.org/10.1016/j.atherosclerosissup.2016.10.001
ISSN: 1567-5688
Publisher: Elsevier
Start Page: 1
End Page: 32
Journal / Book Title: Atherosclerosis Supplements
Volume: 22
Copyright Statement: © 2016 Elsevier Ltd. All rights reserved. This manuscript is licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International http://creativecommons.org/licenses/by-nc-nd/4.0/
Sponsor/Funder: Pfizer Incorporated
European Atherosclerosis Society
Funder's Grant Number: 20056618
N/A
Keywords: Cardiovascular disease
Familial Hypercholesterolaemia Studies Collaboration
Familial hypercholesterolaemia
LDL-Cholesterol
Registry
Study design
Cardiovascular System & Hematology
Publication Status: Published
Open Access location: http://www.sciencedirect.com/science/article/pii/S1567568816300496
Appears in Collections:Faculty of Medicine
Epidemiology, Public Health and Primary Care



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