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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.

EAS Familial Hypercholesterolaemia Studies Collaboration, ; Vallejo-Vaz, AJ; Akram, A; Kondapally Seshasai, SR; Cole, D; Watts, GF; Hovingh, GK; Kastelein, JJP; Mata, P; Raal, FJ; et al. EAS Familial Hypercholesterolaemia Studies Collaboration; Vallejo-Vaz, AJ; Akram, A; Kondapally Seshasai, SR; 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; Gaspar, IM; 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, W; Mirrakhimov, E; Miserez, AR; Mitchenko, O; Nawawi, H; Nilsson, L; Nordestgaard, BG; Paragh, G; Petrulioniene, Z; Pojskic, B; Reiner, Ž; Sahebkar, A; Santos, LE; Schunkert, H; Shehab, A; Slimane, MN; Stoll, M; Su, T-C; Susekov, A; Tilney, M; Tomlinson, B; Tselepis, AD; Vohnout, B; Widén, E; Yamashita, S; Catapano, AL; Ray, KK (2016) 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. Atheroscler Suppl, 22. pp. 1-32. ISSN 1878-5050 https://doi.org/10.1016/j.atherosclerosissup.2016.10.001
SGUL Authors: Cole, Della

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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.

Item Type: Article
Additional Information: © 2016 Elsevier Ireland Ltd. This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/).
Keywords: Cardiovascular disease, Familial Hypercholesterolaemia Studies Collaboration, Familial hypercholesterolaemia, LDL-Cholesterol, Registry, Study design, Access to Information, Cooperative Behavior, Data Mining, Delivery of Health Care, Integrated, Humans, Hyperlipoproteinemia Type II, Information Storage and Retrieval, International Cooperation, Organizational Objectives, Professional Practice Gaps, Registries, Research Design, Treatment Outcome, Cardiovascular System & Hematology
SGUL Research Institute / Research Centre: Academic Structure > Molecular and Clinical Sciences Research Institute (MCS)
Academic Structure > Molecular and Clinical Sciences Research Institute (MCS) > Cardiac (INCCCA)
Journal or Publication Title: Atheroscler Suppl
ISSN: 1878-5050
Language: eng
Dates:
DateEvent
7 December 2016Published
8 August 2016Accepted
Publisher License: Creative Commons: Attribution-Noncommercial-No Derivative Works 4.0
PubMed ID: 27939304
Go to PubMed abstract
URI: https://openaccess.sgul.ac.uk/id/eprint/108641
Publisher's version: https://doi.org/10.1016/j.atherosclerosissup.2016.10.001

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