@article{3106948,
    title = "Overview of the current status of familial hypercholesterolaemia care in over 60 countries - The EAS Familial Hypercholesterolaemia Studies Collaboration (FHSC)",
    author = "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. and Torlak, V.A. and Jannes, C.E. and Krieger, J.E. and Pereira, A.C. and Ruel, I. and Asenjo, S. and Cuevas, A. and Pećin, I. and Miltiadous, G. and Panayiotou, A.G. and Vrablik, M. and Benn, M. and Heinsar, S. and Béliard, S. and Gouni-Berthold, I. and Hengstenberg, W. and Julius, U. and Kassner, U. and Klose, G. and König, C. and König, W. and Otte, B. and Parhofer, K. and Schatz, U. and Schmidt, N. and Steinhagen-Thiessen, E. and Vogt, A. and Antza, C. and Athyros, V. and Bilianou, E. and Boufidou, A. and Chrousos, G. and Elisaf, M. and Garoufi, A. and Katsiki, N. and Kolovou, G. and Kotsis, V. and Rallidis, L. and Rizos, C. and Skalidis, E. and Skoumas, I. and Tziomalos, K. and Shawney, J.P.S. and Abbaszadegan, M.R. and Aminzadeh, M. and Hosseini, S. and Mobini, M. and Vakili, R. and Zaeri, H. and Agar, R. and Boran, G. and Colwell, N. and Crowley, V. and Durkin, M. and Griffin, D. and Kelly, M. and Rakovac-Tisdall, A. and Bitzur, R. and Cohen, H. and Eliav, O. and Ellis, A. and Gavish, D. and Harats, D. and Henkin, Y. and Knobler, H. and Leavit, L. and Leitersdorf, E. and Schurr, D. and Shpitzen, S. and Szalat, A. and Arca, M. and Averna, M. and Bertolini, S. and Calandra, S. and Tarugi, P. and Erglis, A. and Gilis, D. and Nesterovics, G. and Saripo, V. and Upena-Roze, A. and Elbitar, S. and Jambart, S. and Khoury, P.E. and Gargalskaite, U. and Kutkiene, S. and Al-Khateeb, A. and An, C.Y. and Ismail, Z. and Kasim, S. and Ibrahim, K.S. and Radzi, A.B.M. and Kasim, N.A. and Nor, N.S.M. and Ramli, A.S. and Razak, S.A. and Muid, S. and Rosman, A. and Sanusi, A.R. and Razman, A.Z. and Nazli, S.A. and Kek, T.L. and Azzopardi, C. and Aguilar Salinas, C.A. and Galán, G. and Rubinstein, A. and Magaña-Torres, M.T. and Martagon, A. and Mehta, R. and Wittekoek, M.E. and Isara, A.R. and Obaseki, D.E. and Ohenhen, O.A. and Holven, K.B. and Gruchała, M. and Baranowska, M. and Borowiec-Wolny, J. and Gilis-Malinowska, N. and Michalska-Grzonkowska, A. and Pajkowski, M. and Parczewska, A. and Romanowska-Kocejko, M. and Stróżyk, A. and Żarczyńska-Buchowiecka, M. and Kleinschmidt, M. and Alves, A.C. and Medeiros, A.M. and Ershova, A. and Korneva, V. and Kuznetsova, T. and Malyshev, P. and Meshkov, A. and Rozhkova, T. and Popovic, L. and Lukac, S.S. and Stosic, L. and Rasulic, I. and Lalic, N.M. and Chua, T.S.J. and Ting, S.P.L. and Raslova, K. and Battelino, T. and Cevc, M. and Jug, B. and Kovac, J. and Podkrajsek, K.T. and Sustar, U. and Trontelj, K.J. and Marais, D. and Isla, L.P. and Martin, F.J. and Charng, M.-J. and Chen, P.-L. and Kayikçioglu, M. and Dell’oca, N. and Fernández, G. and Ressia, A. and Reyes, X. and Zelarayan, M. and Alieva, R.B. and Hoshimov, S.U. and Nizamov, U.I. and Kurbanov, R.D. and Lima-Martínez, M.M. and Nguyen, M.-N.T. and Do, D.-L. and Kim, N.-T. and Le, T.-T. and Le, H.-A.",
    journal = "Atherosclerosis",
    year = "2018",
    volume = "277",
    pages = "234-255",
    publisher = "Elsevier Ireland Ltd",
    issn = "0021-9150",
    doi = "10.1016/j.atherosclerosis.2018.08.051",
    keywords = "Article;  awareness;  familial hypercholesterolemia;  genetic screening;  government;  health program;  human;  knowledge;  lipoprotein apheresis;  prevalence;  priority journal;  public health problem;  adverse event;  apheresis;  blood;  cooperation;  familial hypercholesterolemia;  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;  Global Health;  Health Care Surveys;  Health Services Accessibility;  Healthcare Disparities;  Humans;  Hyperlipoproteinemia Type II;  International Cooperation;  Phenotype;  Predictive Value of Tests;  Prevalence;  Risk Factors;  Treatment Outcome",
    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."
}