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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 Akram, A. and Car, J. and Marco, M.D. and Ray, K.K. and Stevens, C.A.T. and Vallejo-Vaz, A.J. and Corral, P. and Schreier, L. and Watts, G.F. and Pang, J. and Binder, C.J. and Dieplinger, H. and Hanauer-Mader, G. and Descamps, O. and Desutter, J. and Langlois, M. and Mertens, A. and Rietzschel, E. and Wallemacq, C. and Pojskic, B. and Isakovic, D. and Dzankovic, A.M. and Obralija, J. and Pojskic, L. and Sisic, I. and Stimjanin, E. and Torlak, V.A. and Santos, R.D. and Jannes, C.E. and Krieger, J.E. and Pereira, A.C. and Postadzhiyan, A. and Genest, J. and Ruel, I. and Alonso, R. and Asenjo, S. and Cuevas, A. and Lin, J. and Jiang, L. and Reiner, Ž. and Pećin, I. and Symeonides, P. and Miltiadous, G. and Panayiotou, A.G. and Freiberger, T. and Vrablik, M. and Nordestgaard, B.G. and Tybjærg-Hansen, A. and Benn, M. and Reda, A. and Viigimaa, M. and Heinsar, S. and Widén, E. and Bruckert, E. and Béliard, S. and Laufs, U. and März, W. and Schunkert, H. 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 Liberopoulos, E. and Tselepis, A.D. 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 Tomlinson, B. and Paragh, G. and Ashavaid, T.F. and Shawney, J.P.S. and Sahebkar, A. and Abbaszadegan, M.R. and Aminzadeh, M. and Hosseini, S. and Mobini, M. and Vakili, R. and Zaeri, H. and Al-Khnifsawi, M. and Maher, V. 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 Durst, R. 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 Rubinstein, A. and Schurr, D. and Shpitzen, S. and Szalat, A. and Catapano, A.L. and Arca, M. and Averna, M. and Bertolini, S. and Calandra, S. and Tarugi, P. and Harada-Shiba, M. and Yamashita, S. and Al-Sarraf, A. and Mirrakhimov, E. and Latkovskis, G. and Erglis, A. and Gilis, D. and Nesterovics, G. and Saripo, V. and Upena-Roze, A. and Abifadel, M. and Elbitar, S. and Jambart, S. and Khoury, P.E. and Petrulioniene, Z. and Gargalskaite, U. and Kutkiene, S. and Nawawi, H.M. 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 Tilney, M. and Azzopardi, C. and Aguilar Salinas, C.A. and Vázquez-Cárdenas, N.A. and Galán, G. and Magaña-Torres, M.T. and Martagon, A. and Mehta, R. and Hovingh, G.K. and Kastelein, J.J.P. and Wittekoek, M.E. and Sadoh, W.E. and Isara, A.R. and Obaseki, D.E. and Ohenhen, O.A. and Bogsrud, M.P. and Holven, K.B. and Al-Rasadi, K. and Santos, L.E. and Banach, M. and Chlebus, K. 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 Bourbon, M. and Alves, A.C. and Medeiros, A.M. and Alkindi, F.A. and Gaita, D. and Ezhov, M. and Susekov, A.V. and Ershova, A. and Korneva, V. and Kuznetsova, T. and Malyshev, P. and Meshkov, A. and Rozhkova, T. and Alnouri, F. and Lalic, K. and Rajkovic, N. and Popovic, L. and Lukac, S.S. and Stosic, L. and Rasulic, I. and Lalic, N.M. and Subramaniam, T. and Lam, C.S.P. and Chua, T.S.J. and Ting, S.P.L. and Vohnout, B. and Raslova, K. and Fras, Z. and Groselj, U. 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 Raal, F.J. and Mata, P. and Isla, L.P. and Nilsson, L. and Miserez, A.R. and Martin, F.J. and Su, T.-C. and Charng, M.-J. and Chen, P.-L. and Kayikçioglu, M. and Tokgözoğlu, L. and Mitchenko, O. and Shehab, A. and Soran, H. and Stoll, M. and Dell’oca, N. and Fernández, G. and Ressia, A. and Reyes, X. and Zelarayan, M. and Shek, A.B. and Alieva, R.B. and Hoshimov, S.U. and Kurbanov, R.D. and Nizamov, U.I. and Majano, N. and Lima-Martínez, M.M. and Truong, T.-H. and Nguyen, M.-N.T. and Do, D.-L. and Kim, N.-T. and Le, H.-A. and Le, T.-T. (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 1
Uncontrolled Keywords: Article; awareness; familial hypercholesterolemia; genetic screening; government; health program; human; knowledge; lipoprotein apheresis; prevalence; priority journal; public health problem
Subjects: بیماریهای تغذیه ومتابولیکی WD
مقالات نمایه شده محققین دانشگاه در سایت ,Web of Science ,Scopus
Divisions: UNSPECIFIED
Depositing User: GOUMS
Date Deposited: 23 Dec 2018 09:22
Last Modified: 23 Dec 2018 09:22
URI: http://eprints.goums.ac.ir/id/eprint/9723

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