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

Vallejo-Vaz, A. J. and Akram, A. and Kondapally Seshasai, S. R. and Cole, D. and Watts, G. F. and Hovingh, G. K. and Kastelein, J. J. P. and Mata, P. and Raal, F. J. and Santos, R. D. and Soran, H. and Freiberger, T. and Abifadel, M. and Aguilar-Salinas, C. A. and Alnouri, F. and Alonso, R. and Al-Rasadi, K. and Banach, M. and Bogsrud, M. P. and Bourbon, M. and Bruckert, E. and Car, J. and Ceska, R. and Corral, P. and Descamps, O. and Dieplinger, H. and Do, C. T. and Durst, R. and Ezhov, M. V. and Fras, Z. and Gaita, D. and Gaspar, I. M. and Genest, J. and Harada-Shiba, M. and Jiang, L. and Kayikcioglu, M. and Lam, C. S. P. and Latkovskis, G. and Laufs, U. and Liberopoulos, E. and Lin, J. and Lin, N. and Maher, V. and Majano, N. and Marais, A. D. and März, W. and Mirrakhimov, E. and Miserez, A. R. and Mitchenko, O. and Nawawi, H. and Nilsson, L. and Nordestgaard, B. G. and Paragh, G. and Petrulioniene, Z. and Pojskic, B. and Reiner, Ž and Sahebkar, A. and Santos, L. E. and Schunkert, H. and Shehab, A. and Slimane, M. N. and Stoll, M. and Su, T. C. and Susekov, A. and Tilney, M. and Tomlinson, B. and Tselepis, A. D. and Vohnout, B. and Widén, E. and Yamashita, S. and Catapano, A. L. and Ray, K. K. (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, 22. pp. 1-32.

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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. © 2016 Elsevier Ireland Ltd

Item Type: Article
Additional Information: Cited By :54 Export Date: 16 February 2020 CODEN: ASTUC Correspondence Address: Vallejo-Vaz, A.J.; Imperial Centre for Cardiovascular Disease Prevention, Dept. of Primary Care and Public Health, School of Public Health, Imperial College London, Reynolds Building, St Dunstan's Road, United Kingdom; email: a.vallejo-vaz@imperial.ac.uk
Uncontrolled Keywords: Cardiovascular disease Familial hypercholesterolaemia Familial Hypercholesterolaemia Studies Collaboration LDL-Cholesterol Registry Study design Article computer security data base familial hypercholesterolemia human information dissemination information processing interpersonal communication medical ethics medical information medical society methodology patient care priority journal access to information clinical trial cooperation data mining genetics Hyperlipoproteinemia Type II information retrieval integrated health care system international cooperation mortality multicenter study organization organization and management practice gap register treatment outcome Cooperative Behavior Delivery of Health Care, Integrated Humans Information Storage and Retrieval Organizational Objectives Professional Practice Gaps Registries Research Design
Subjects: WH Hemic and Lymphatic System
Divisions: Mashhad University of Medical Sciences
Depositing User: mr lib4 lib4
Date Deposited: 04 Mar 2020 04:40
Last Modified: 04 Mar 2020 04:40
URI: http://eprints.mums.ac.ir/id/eprint/13247

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