Overview of the current status of familial hypercholesterolaemia care in over 60 countries - The EAS Familial Hypercholesterolaemia Studies Collaboration (FHSC)

Vallejo-Vaz, A. J. and Marco, M. D. and Stevens, C. A. T. and Akram, A. and Freiberger, T. and Hovingh, G. K. and Kastelein, J. J. P. and Mata, P. and Raal, F. J. and Santos, R. D. and Soran, H. and Watts, G. F. and Abifadel, M. and Aguilar-Salinas, C. A. and Al-Khnifsawi, M. and Alkindi, F. A. and Alnouri, F. and Alonso, R. and Al-Rasadi, K. and Al-Sarraf, A. and Ashavaid, T. F. and Binder, C. J. and Bogsrud, M. P. and Bourbon, M. and Bruckert, E. and Chlebus, K. and Corral, P. and Descamps, O. and Durst, R. and Ezhov, M. and Fras, Z. and Genest, J. and Groselj, U. and Harada-Shiba, M. and Kayikcioglu, M. and Lalic, K. and Lam, C. S. P. and Latkovskis, G. and Laufs, U. and Liberopoulos, E. and Lin, J. 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. M. and Nordestgaard, B. G. and Paragh, G. and Petrulioniene, Z. and Pojskic, B. and Postadzhiyan, A. and Reda, A. and Reiner, Ž and Sadoh, W. E. and Sahebkar, A. and Shehab, A. and Shek, A. B. and Stoll, M. and Su, T. C. and Subramaniam, T. and Susekov, A. V. and Symeonides, P. and Tilney, M. and Tomlinson, B. and Truong, T. H. and Tselepis, A. D. and Tybjærg-Hansen, A. and Vázquez-Cárdenas, A. and Viigimaa, M. and Vohnout, B. and Widén, E. and Yamashita, S. and Banach, M. and Gaita, D. and Jiang, L. and Nilsson, L. and Santos, L. E. and Schunkert, H. and Tokgözoğlu, L. and Car, J. and Catapano, A. L. and Ray, K. K. and Schreier, L. and Pang, J. and Dieplinger, H. and Hanauer-Mader, G. and Desutter, J. and Langlois, M. and Mertens, A. and Rietzschel, E. and Wallemacq, C. and Isakovic, D. and Dzankovic, A. M. and Obralija, J. and Pojskic, L. and Sisic, I. and Stimjanin, E. (2018) Overview of the current status of familial hypercholesterolaemia care in over 60 countries - The EAS Familial Hypercholesterolaemia Studies Collaboration (FHSC). Atherosclerosis, 277. pp. 234-255.

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Abstract

Background and aims: Management of familial hypercholesterolaemia (FH) may vary across different settings due to factors related to population characteristics, practice, resources and/or policies. We conducted a survey among the worldwide network of EAS FHSC Lead Investigators to provide an overview of FH status in different countries. Methods: Lead Investigators from countries formally involved in the EAS FHSC by mid-May 2018 were invited to provide a brief report on FH status in their countries, including available information, programmes, initiatives, and management. Results: 63 countries provided reports. Data on FH prevalence are lacking in most countries. Where available, data tend to align with recent estimates, suggesting a higher frequency than that traditionally considered. Low rates of FH detection are reported across all regions. National registries and education programmes to improve FH awareness/knowledge are a recognised priority, but funding is often lacking. In most countries, diagnosis primarily relies on the Dutch Lipid Clinics Network criteria. Although available in many countries, genetic testing is not widely implemented (frequent cost issues). There are only a few national official government programmes for FH. Under-treatment is an issue. FH therapy is not universally reimbursed. PCSK9-inhibitors are available in ∼2/3 countries. Lipoprotein-apheresis is offered in ∼60 countries, although access is limited. Conclusions: FH is a recognised public health concern. Management varies widely across countries, with overall suboptimal identification and under-treatment. Efforts and initiatives to improve FH knowledge and management are underway, including development of national registries, but support, particularly from health authorities, and better funding are greatly needed. © 2018 Elsevier B.V.

Item Type: Article
Additional Information: Cited By :28 Export Date: 16 February 2020 CODEN: ATHSB
Uncontrolled Keywords: Familial hypercholesterolaemia FHSC Primary dyslipidaemia Article awareness familial hypercholesterolemia genetic screening government health program human knowledge lipoprotein apheresis prevalence priority journal public health problem adverse event apheresis blood cooperation genetic predisposition global health health care delivery health care disparity health care survey international cooperation phenotype predictive value risk factor treatment outcome biological marker hypocholesterolemic agent low density lipoprotein cholesterol Anticholesteremic Agents Biomarkers Blood Component Removal Cholesterol, LDL Cooperative Behavior Genetic Predisposition to Disease Health Care Surveys Health Services Accessibility Healthcare Disparities Humans Hyperlipoproteinemia Type II Predictive Value of Tests Risk Factors
Subjects: WG Cardiovascular System
QZ pathology-neoplasms-Genetics
Divisions: Mashhad University of Medical Sciences
Depositing User: lib2 lib2 lib2
Date Deposited: 27 Apr 2020 06:59
Last Modified: 27 Apr 2020 06:59
URI: http://eprints.mums.ac.ir/id/eprint/17571

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