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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Vallejo-Vaz , A J , Akram , A , Seshasai , S R K , Cole , D , Watts , G F , Hovingh , G K , Kastelein , J J P , Mata , P , Raal , F J , Santos , R D , Soran , H , Freiberger , T , Abifadel , M , Aguilar-Salinas , C A , Alnouri , F , Alonso , R , Al-Rasadi , K , Banach , M , Bogsrud , M P , Bourbon , M , Bruckert , E , Car , J , Ceska , R , Corral , P , Descamps , O , Dieplinger , H , Do , C T , Durst , R , Ezhov , M V , Fras , Z , Gaita , D , Gaspar , I M , Genest , J , Harada-Shiba , M , Jiang , L , Kayikcioglu , M , Lam , C S P , Latkovskis , G , Laufs , U , Liberopoulos , E , Lin , J , Lin , N , Maher , V , Majano , N , Marais , A D , Maerz , W , Mirrakhimov , E , Miserez , A R , Mitchenko , O , Widen , E & EAS Familial Hypercholesterolaemia 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 ' , Atherosclerosis. Supplements , vol. 22 , pp. 1-32 . https://doi.org/10.1016/j.atherosclerosissup.2016.10.001

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: Vallejo-Vaz, Antonio J.; Akram, Asif; Seshasai, Sreenivasa Rao Kondapally; Cole, Della; Watts, Gerald F.; Hovingh, G. Kees; Kastelein, John J. P.; Mata, Pedro; Raal, Frederick J.; Santos, Raul D.; Soran, Handrean; Freiberger, Tomas; Abifadel, Marianne; Aguilar-Salinas, Carlos A.; Alnouri, Fahad; Alonso, Rodrigo; Al-Rasadi, Khalid; Banach, Maciej; Bogsrud, Martin P.; Bourbon, Mafalda; Bruckert, Eric; Car, Josip; Ceska, Richard; Corral, Pablo; Descamps, Olivier; Dieplinger, Hans; Do, Can T.; Durst, Ronen; Ezhov, Marat V.; Fras, Zlatko; Gaita, Dan; Gaspar, Isabel M.; Genest, Jaques; Harada-Shiba, Mariko; Jiang, Lixin; Kayikcioglu, Meral; Lam, Carolyn S. P.; Latkovskis, Gustavs; Laufs, Ulrich; Liberopoulos, Evangelos; Lin, Jie; Lin, Nan; Maher, Vincent; Majano, Nelson; Marais, A. David; Maerz, Winfried; Mirrakhimov, Erkin; Miserez, Andre R.; Mitchenko, Olena; Widen, Elisabeth; EAS Familial Hypercholesterolaemia
Contributor: University of Helsinki, Institute for Molecular Medicine Finland
Date: 2016-12
Language: eng
Number of pages: 32
Belongs to series: Atherosclerosis. Supplements
ISSN: 1567-5688
URI: http://hdl.handle.net/10138/176777
Abstract: 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.
Subject: Familial hypercholesterolaemia
LDL-Cholesterol
Cardiovascular disease
Registry
Study design
Familial Hypercholesterolaemia Studies Collaboration
EUROPEAN ATHEROSCLEROSIS SOCIETY
INDIVIDUAL PARTICIPANT DATA
CARDIOVASCULAR-DISEASE
GENERAL-POPULATION
CONSENSUS PANEL
PREVALENCE
PREDICTION
GUIDANCE
RISK
GUIDELINES
3121 Internal medicine
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