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

Antonio J. Vallejo-Vaz; Martina De Marco; Christophe A.T. Stevens; Asif Akram; Tomas Freiberger; G. Kees Hovingh; John J.P. Kastelein; Pedro Mata; Frederick J. Raal; Raul D. Santos; Handrean Soran; Gerald F. Watts; Marianne Abifadel; Carlos A. Aguilar Salinas; Mutaz Al-Khnifsawi; Fahad A. Alkindi; Fahad Alnouri; Rodrigo Alonso; Khalid Al-Rasadi; Ahmad Al-Sarraf; Tester F. Ashavaid; Christoph J. Binder; Martin P. Bogsrud; Mafalda Bourbon; Eric Bruckert; Krzysztof Chlebus; Pablo Corral; Olivier Descamps; Ronen Durst; Marat Ezhov; Zlatko Fras; Jacques Genest; Urh Groselj; Mariko Harada-Shiba; Meral Kayikçioglu; Katarina Lalic; Carolyn S.P. Lam; Gustavs Latkovskis; Ulrich Laufs; Evangelos Liberopoulos; Jie Lin; Vincent Maher; Nelson Majano; David Marais; Winfried März; Erkin Mirrakhimov; André R. Miserez; Olena Mitchenko; Hapizah M. Nawawi; Børge G. Nordestgaard; György Paragh; Zaneta Petrulioniene; Belma Pojskic; Arman Postadzhiyan; Ashraf Reda; Željko Reiner; Wilson E. Sadoh; Amirhossein Sahebkar; Abdullah Shehab; Aleksander B. Shek; Mario Stoll; Ta Chen Su; Tavintharan Subramaniam; Andrey V. Susekov; Phivos Symeonides; Myra Tilney; Brian Tomlinson; Thanh Huong Truong; Alexandros D. Tselepis; Anne Tybjærg-Hansen; Alejandra Vázquez-Cárdenas; Margus Viigimaa; Branislav Vohnout; Elisabeth Widén; Shizuya Yamashita; Maciej Banach; Dan Gaita; Lixin Jiang; Lennart Nilsson; Lourdes E. Santos; Heribert Schunkert; Lale Tokgözoğlu; Josip Car; Alberico L. Catapano; Kausik K. Ray; Laura Schreier; Jing Pang; Hans Dieplinger; Gabriele Hanauer-Mader; Johan Desutter; Michel Langlois; Ann Mertens; Ernst Rietzschel; Caroline Wallemacq; Dzenana Isakovic; Amra M. Dzankovic; Jasna Obralija; Lamija Pojskic; Ibrahim Sisic; Ena Stimjanin; Vildana A. Torlak; Cinthia E. Jannes; Jose E. Krieger; Alexandre C. Pereira; Isabelle Ruel; Sylvia Asenjo; Ada Cuevas; Ivan Pećin; George Miltiadous; Andrie G. Panayiotou; Michal Vrablik; Marianne Benn; Silver Heinsar; S. Béliard; Ioanna Gouni-Berthold; Wibke Hengstenberg; Ulrich Julius; Ursula Kassner; Gerald Klose; Christel König; Wolfgang König; Britta Otte; Klaus Parhofer; Ulrike Schatz; Nina Schmidt; Elisabeth Steinhagen-Thiessen; Anja Vogt; Christina Antza; Vasilios Athyros; Eleni Bilianou; Amalia Boufidou; George Chrousos; Moses Elisaf; Anastasia Garoufi; Niki Katsiki; Genovefa Kolovou; Vasilios Kotsis; Loukianos Rallidis; Christos Rizos; Emmanouel Skalidis; Ioannis Skoumas; Kostantinos Tziomalos; J. P.S. Shawney; Mohammad R. Abbaszadegan; Majid Aminzadeh; Sousan Hosseini; Moein Mobini; Rahim Vakili; Hossein Zaeri; Ruth Agar; Gerard Boran; Nial Colwell; Vivion Crowley; Maeve Durkin; Damian Griffin; Michael Kelly; Ana Rakovac-Tisdall; Rafael Bitzur; Hofit Cohen; Osnat Eliav; Avishay Ellis; Dov Gavish; Dror Harats; Yaacov Henkin; Hila Knobler; Leah Leavit; Eran Leitersdorf; Daniel Schurr; Shoshi Shpitzen; Auryan Szalat; Marcello Arca; Maurizio Averna; Stefano Bertolini; Sebastiano Calandra; Patrizia Tarugi; Andrejs Erglis; Dainus Gilis; Georgijs Nesterovics; Vita Saripo; Arta Upena-Roze; Sandy Elbitar; Sélim Jambart; Petra El Khoury; Urte Gargalskaite; Sandra Kutkiene; Alyaa Al-Khateeb; Chua Y. An; Zaliha Ismail; Sazzli Kasim; Khairul S. Ibrahim; Ahmad B.M. Radzi; Noor A. Kasim; Noor S.M. Nor; Anis S. Ramli; Suraya A. Razak; Suhaila Muid; Azhari Rosman; Abd R. Sanusi; Aimi Z. Razman; Sukma A. Nazli; Teh L. Kek; Conrad Azzopardi; Carlos A. Aguilar Salinas; Gabriela Galán; Ardon Rubinstein; M. T. Magaña-Torres; Alexandro Martagon; Roopa Mehta; M. E. Wittekoek; Alphonsus R. Isara; Darlington E. Obaseki; Oluwatoyin A. Ohenhen; Kirsten B. Holven; Marcin Gruchała; Marlena Baranowska; Justyna Borowiec-Wolny; Natasza Gilis-Malinowska; Aleksandra Michalska-Grzonkowska; Marcin Pajkowski; Aleksandra Parczewska; Marzena Romanowska-Kocejko; Aneta Stróżyk; Marta Żarczyńska-Buchowiecka; Mariola Kleinschmidt; Ana C. Alves; Ana M. Medeiros; Alexandra Ershova; Victoria Korneva; Tatiana Kuznetsova; Pavel Malyshev; Alexey Meshkov; Tatiana Rozhkova; Ljiljana Popovic; Sandra S. Lukac; Ljubica Stosic; Iva Rasulic; Nebojsa M. Lalic; Terrance S.J. Chua; Sharon P.L. Ting; Katarina Raslova; Tadej Battelino; Matija Cevc; Borut Jug; Jernej Kovac; Katarina T. Podkrajsek; Ursa Sustar; Katja J. Trontelj; David Marais; Leopoldo Perez de Isla; François J. Martin; Ming Ji Charng; Pei Lung Chen; Meral Kayikçioglu; Nicolás Dell’oca; Graciela Fernández; Andrés Ressia; Ximena Reyes; Mario Zelarayan; Rano B. Alieva; Shavkat U. Hoshimov; Ulugbek I. Nizamov; Ravshanbek D. Kurbanov; Marcos M. Lima-Martínez; Mai Ngoc Thi Nguyen; Doan Loi Do; Ngoc Thanh Kim; Thanh Tung Le; Hong An Le

doi:10.1016/j.atherosclerosis.2018.08.051

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

Antonio J. Vallejo-Vaz, Martina De Marco, Christophe A.T. Stevens, Asif Akram, Tomas Freiberger, G. Kees Hovingh, John J.P. Kastelein, Pedro Mata, Frederick J. Raal, Raul D. Santos, Handrean Soran, Gerald F. Watts, Marianne Abifadel, Carlos A. Aguilar Salinas, Mutaz Al-Khnifsawi, Fahad A. Alkindi, Fahad Alnouri, Rodrigo Alonso, Khalid Al-Rasadi, Ahmad Al-SarrafTester F. Ashavaid, Christoph J. Binder, Martin P. Bogsrud, Mafalda Bourbon, Eric Bruckert, Krzysztof Chlebus, Pablo Corral, Olivier Descamps, Ronen Durst, Marat Ezhov, Zlatko Fras, Jacques Genest, Urh Groselj, Mariko Harada-Shiba, Meral Kayikçioglu, Katarina Lalic, Carolyn S.P. Lam, Gustavs Latkovskis, Ulrich Laufs, Evangelos Liberopoulos, Jie Lin, Vincent Maher, Nelson Majano, David Marais, Winfried März, Erkin Mirrakhimov, André R. Miserez, Olena Mitchenko, Hapizah M. Nawawi, Børge G. Nordestgaard, György Paragh, Zaneta Petrulioniene, Belma Pojskic, Arman Postadzhiyan, Ashraf Reda, Željko Reiner, Wilson E. Sadoh, Amirhossein Sahebkar, Abdullah Shehab, Aleksander B. Shek, Mario Stoll, Ta Chen Su, Tavintharan Subramaniam, Andrey V. Susekov, Phivos Symeonides, Myra Tilney, Brian Tomlinson, Thanh Huong Truong, Alexandros D. Tselepis, Anne Tybjærg-Hansen, Alejandra Vázquez-Cárdenas, Margus Viigimaa, Branislav Vohnout, Elisabeth Widén, Shizuya Yamashita, Maciej Banach, Dan Gaita, Lixin Jiang, Lennart Nilsson, Lourdes E. Santos, Heribert Schunkert, Lale Tokgözoğlu, Josip Car, Alberico L. Catapano, Kausik K. Ray, Laura Schreier, Jing Pang, Hans Dieplinger, Gabriele Hanauer-Mader, Johan Desutter, Michel Langlois, Ann Mertens, Ernst Rietzschel, Caroline Wallemacq, Dzenana Isakovic, Amra M. Dzankovic, Jasna Obralija, Lamija Pojskic, Ibrahim Sisic, Ena Stimjanin, Vildana A. Torlak, Cinthia E. Jannes, Jose E. Krieger, Alexandre C. Pereira, Isabelle Ruel, Sylvia Asenjo, Ada Cuevas, Ivan Pećin, George Miltiadous, Andrie G. Panayiotou, Michal Vrablik, Marianne Benn, Silver Heinsar, S. Béliard, Ioanna Gouni-Berthold, Wibke Hengstenberg, Ulrich Julius, Ursula Kassner, Gerald Klose, Christel König, Wolfgang König, Britta Otte, Klaus Parhofer, Ulrike Schatz, Nina Schmidt, Elisabeth Steinhagen-Thiessen, Anja Vogt, Christina Antza, Vasilios Athyros, Eleni Bilianou, Amalia Boufidou, George Chrousos, Moses Elisaf, Anastasia Garoufi, Niki Katsiki, Genovefa Kolovou, Vasilios Kotsis, Loukianos Rallidis, Christos Rizos, Emmanouel Skalidis, Ioannis Skoumas, Kostantinos Tziomalos, J. P.S. Shawney, Mohammad R. Abbaszadegan, Majid Aminzadeh, Sousan Hosseini, Moein Mobini, Rahim Vakili, Hossein Zaeri, Ruth Agar, Gerard Boran, Nial Colwell, Vivion Crowley, Maeve Durkin, Damian Griffin, Michael Kelly, Ana Rakovac-Tisdall, Rafael Bitzur, Hofit Cohen, Osnat Eliav, Avishay Ellis, Dov Gavish, Dror Harats, Yaacov Henkin, Hila Knobler, Leah Leavit, Eran Leitersdorf, Daniel Schurr, Shoshi Shpitzen, Auryan Szalat, Marcello Arca, Maurizio Averna, Stefano Bertolini, Sebastiano Calandra, Patrizia Tarugi, Andrejs Erglis, Dainus Gilis, Georgijs Nesterovics, Vita Saripo, Arta Upena-Roze, Sandy Elbitar, Sélim Jambart, Petra El Khoury, Urte Gargalskaite, Sandra Kutkiene, Alyaa Al-Khateeb, Chua Y. An, Zaliha Ismail, Sazzli Kasim, Khairul S. Ibrahim, Ahmad B.M. Radzi, Noor A. Kasim, Noor S.M. Nor, Anis S. Ramli, Suraya A. Razak, Suhaila Muid, Azhari Rosman, Abd R. Sanusi, Aimi Z. Razman, Sukma A. Nazli, Teh L. Kek, Conrad Azzopardi, Carlos A. Aguilar Salinas, Gabriela Galán, Ardon Rubinstein, M. T. Magaña-Torres, Alexandro Martagon, Roopa Mehta, M. E. Wittekoek, Alphonsus R. Isara, Darlington E. Obaseki, Oluwatoyin A. Ohenhen, Kirsten B. Holven, Marcin Gruchała, Marlena Baranowska, Justyna Borowiec-Wolny, Natasza Gilis-Malinowska, Aleksandra Michalska-Grzonkowska, Marcin Pajkowski, Aleksandra Parczewska, Marzena Romanowska-Kocejko, Aneta Stróżyk, Marta Żarczyńska-Buchowiecka, Mariola Kleinschmidt, Ana C. Alves, Ana M. Medeiros, Alexandra Ershova, Victoria Korneva, Tatiana Kuznetsova, Pavel Malyshev, Alexey Meshkov, Tatiana Rozhkova, Ljiljana Popovic, Sandra S. Lukac, Ljubica Stosic, Iva Rasulic, Nebojsa M. Lalic, Terrance S.J. Chua, Sharon P.L. Ting, Katarina Raslova, Tadej Battelino, Matija Cevc, Borut Jug, Jernej Kovac, Katarina T. Podkrajsek, Ursa Sustar, Katja J. Trontelj, David Marais, Leopoldo Perez de Isla, François J. Martin, Ming Ji Charng, Pei Lung Chen, Meral Kayikçioglu, Nicolás Dell’oca, Graciela Fernández, Andrés Ressia, Ximena Reyes, Mario Zelarayan, Rano B. Alieva, Shavkat U. Hoshimov, Ulugbek I. Nizamov, Ravshanbek D. Kurbanov, Marcos M. Lima-Martínez, Mai Ngoc Thi Nguyen, Doan Loi Do, Ngoc Thanh Kim, Thanh Tung Le, Hong An Le

Department of Clinical Medicine

68 Citations (Scopus)

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.

Original language	English
Journal	Atherosclerosis
Volume	277
Pages (from-to)	234-255
Number of pages	22
ISSN	0021-9150
DOIs	https://doi.org/10.1016/j.atherosclerosis.2018.08.051
Publication status	Published - 2018

Keywords

Familial hypercholesterolaemia
FHSC
Primary dyslipidaemia

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

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10.1016/j.atherosclerosis.2018.08.051

http://www.atherosclerosis-journal.com/article/S0021915018313595/pdf

Cite this

Vallejo-Vaz, A. J., Marco, M. D., Stevens, C. A. T., Akram, A., Freiberger, T., Hovingh, G. K., Kastelein, J. J. P., Mata, P., Raal, F. J., Santos, R. D., Soran, H., Watts, G. F., Abifadel, M., Aguilar Salinas, C. A., Al-Khnifsawi, M., Alkindi, F. A., Alnouri, F., Alonso, R., Al-Rasadi, K., ... Le, H. A. (2018). Overview of the current status of familial hypercholesterolaemia care in over 60 countries - The EAS Familial Hypercholesterolaemia Studies Collaboration (FHSC). Atherosclerosis, 277, 234-255. https://doi.org/10.1016/j.atherosclerosis.2018.08.051

Overview of the current status of familial hypercholesterolaemia care in over 60 countries - The EAS Familial Hypercholesterolaemia Studies Collaboration (FHSC). / Vallejo-Vaz, Antonio J.; Marco, Martina De; Stevens, Christophe A.T. et al.

In: Atherosclerosis, Vol. 277, 2018, p. 234-255.

Research output: Contribution to journal › Journal article › Research › peer-review

Vallejo-Vaz, AJ, Marco, MD, Stevens, CAT, Akram, A, Freiberger, T, Hovingh, GK, Kastelein, JJP, Mata, P, Raal, FJ, Santos, RD, Soran, H, Watts, GF, Abifadel, M, Aguilar Salinas, CA, Al-Khnifsawi, M, Alkindi, FA, Alnouri, F, Alonso, R, Al-Rasadi, K, Al-Sarraf, A, Ashavaid, TF, Binder, CJ, Bogsrud, MP, Bourbon, M, Bruckert, E, Chlebus, K, Corral, P, Descamps, O, Durst, R, Ezhov, M, Fras, Z, Genest, J, Groselj, U, Harada-Shiba, M, Kayikçioglu, M, Lalic, K, Lam, CSP, Latkovskis, G, Laufs, U, Liberopoulos, E, Lin, J, Maher, V, Majano, N, Marais, D, März, W, Mirrakhimov, E, Miserez, AR, Mitchenko, O, Nawawi, HM, Nordestgaard, BG, Paragh, G, Petrulioniene, Z, Pojskic, B, Postadzhiyan, A, Reda, A, Reiner, Ž, Sadoh, WE, Sahebkar, A, Shehab, A, Shek, AB, Stoll, M, Su, TC, Subramaniam, T, Susekov, AV, Symeonides, P, Tilney, M, Tomlinson, B, Truong, TH, Tselepis, AD, Tybjærg-Hansen, A, Vázquez-Cárdenas, A, Viigimaa, M, Vohnout, B, Widén, E, Yamashita, S, Banach, M, Gaita, D, Jiang, L, Nilsson, L, Santos, LE, Schunkert, H, Tokgözoğlu, L, Car, J, Catapano, AL, Ray, KK, Schreier, L, Pang, J, Dieplinger, H, Hanauer-Mader, G, Desutter, J, Langlois, M, Mertens, A, Rietzschel, E, Wallemacq, C, Isakovic, D, Dzankovic, AM, Obralija, J, Pojskic, L, Sisic, I, Stimjanin, E, Torlak, VA, Jannes, CE, Krieger, JE, Pereira, AC, Ruel, I, Asenjo, S, Cuevas, A, Pećin, I, Miltiadous, G, Panayiotou, AG, Vrablik, M, Benn, M, Heinsar, S, Béliard, S, Gouni-Berthold, I, Hengstenberg, W, Julius, U, Kassner, U, Klose, G, König, C, König, W, Otte, B, Parhofer, K, Schatz, U, Schmidt, N, Steinhagen-Thiessen, E, Vogt, A, Antza, C, Athyros, V, Bilianou, E, Boufidou, A, Chrousos, G, Elisaf, M, Garoufi, A, Katsiki, N, Kolovou, G, Kotsis, V, Rallidis, L, Rizos, C, Skalidis, E, Skoumas, I, Tziomalos, K, Shawney, JPS, Abbaszadegan, MR, Aminzadeh, M, Hosseini, S, Mobini, M, Vakili, R, Zaeri, H, Agar, R, Boran, G, Colwell, N, Crowley, V, Durkin, M, Griffin, D, Kelly, M, Rakovac-Tisdall, A, Bitzur, R, Cohen, H, Eliav, O, Ellis, A, Gavish, D, Harats, D, Henkin, Y, Knobler, H, Leavit, L, Leitersdorf, E, Schurr, D, Shpitzen, S, Szalat, A, Arca, M, Averna, M, Bertolini, S, Calandra, S, Tarugi, P, Erglis, A, Gilis, D, Nesterovics, G, Saripo, V, Upena-Roze, A, Elbitar, S, Jambart, S, Khoury, PE, Gargalskaite, U, Kutkiene, S, Al-Khateeb, A, An, CY, Ismail, Z, Kasim, S, Ibrahim, KS, Radzi, ABM, Kasim, NA, Nor, NSM, Ramli, AS, Razak, SA, Muid, S, Rosman, A, Sanusi, AR, Razman, AZ, Nazli, SA, Kek, TL, Azzopardi, C, Aguilar Salinas, CA, Galán, G, Rubinstein, A, Magaña-Torres, MT, Martagon, A, Mehta, R, Wittekoek, ME, Isara, AR, Obaseki, DE, Ohenhen, OA, Holven, KB, Gruchała, M, Baranowska, M, Borowiec-Wolny, J, Gilis-Malinowska, N, Michalska-Grzonkowska, A, Pajkowski, M, Parczewska, A, Romanowska-Kocejko, M, Stróżyk, A, Żarczyńska-Buchowiecka, M, Kleinschmidt, M, Alves, AC, Medeiros, AM, Ershova, A, Korneva, V, Kuznetsova, T, Malyshev, P, Meshkov, A, Rozhkova, T, Popovic, L, Lukac, SS, Stosic, L, Rasulic, I, Lalic, NM, Chua, TSJ, Ting, SPL, Raslova, K, Battelino, T, Cevc, M, Jug, B, Kovac, J, Podkrajsek, KT, Sustar, U, Trontelj, KJ, Marais, D, Isla, LPD, Martin, FJ, Charng, MJ, Chen, PL, Kayikçioglu, M, Dell’oca, N, Fernández, G, Ressia, A, Reyes, X, Zelarayan, M, Alieva, RB, Hoshimov, SU, Nizamov, UI, Kurbanov, RD, Lima-Martínez, MM, Nguyen, MNT, Do, DL, Kim, NT, Le, TT & Le, HA 2018, 'Overview of the current status of familial hypercholesterolaemia care in over 60 countries - The EAS Familial Hypercholesterolaemia Studies Collaboration (FHSC)', Atherosclerosis, vol. 277, pp. 234-255. https://doi.org/10.1016/j.atherosclerosis.2018.08.051

@article{caef99e4031d40d3a374d44494dada59,

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

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.",

keywords = "Familial hypercholesterolaemia, FHSC, Primary dyslipidaemia",

author = "Vallejo-Vaz, {Antonio J.} and Marco, {Martina De} and Stevens, {Christophe A.T.} and Asif Akram and Tomas Freiberger and Hovingh, {G. Kees} and Kastelein, {John J.P.} and Pedro Mata and Raal, {Frederick J.} and Santos, {Raul D.} and Handrean Soran and Watts, {Gerald F.} and Marianne Abifadel and {Aguilar Salinas}, {Carlos A.} and Mutaz Al-Khnifsawi and Alkindi, {Fahad A.} and Fahad Alnouri and Rodrigo Alonso and Khalid Al-Rasadi and Ahmad Al-Sarraf and Ashavaid, {Tester F.} and Binder, {Christoph J.} and Bogsrud, {Martin P.} and Mafalda Bourbon and Eric Bruckert and Krzysztof Chlebus and Pablo Corral and Olivier Descamps and Ronen Durst and Marat Ezhov and Zlatko Fras and Jacques Genest and Urh Groselj and Mariko Harada-Shiba and Meral Kayik{\c c}ioglu and Katarina Lalic and Lam, {Carolyn S.P.} and Gustavs Latkovskis and Ulrich Laufs and Evangelos Liberopoulos and Jie Lin and Vincent Maher and Nelson Majano and David Marais and Winfried M{\"a}rz and Erkin Mirrakhimov and Miserez, {Andr{\'e} R.} and Olena Mitchenko and Nawawi, {Hapizah M.} and Nordestgaard, {B{\o}rge G.} and Gy{\"o}rgy Paragh and Zaneta Petrulioniene and Belma Pojskic and Arman Postadzhiyan and Ashraf Reda and {\v Z}eljko Reiner and Sadoh, {Wilson E.} and Amirhossein Sahebkar and Abdullah Shehab and Shek, {Aleksander B.} and Mario Stoll and Su, {Ta Chen} and Tavintharan Subramaniam and Susekov, {Andrey V.} and Phivos Symeonides and Myra Tilney and Brian Tomlinson and Truong, {Thanh Huong} and Tselepis, {Alexandros D.} and Anne Tybj{\ae}rg-Hansen and Alejandra V{\'a}zquez-C{\'a}rdenas and Margus Viigimaa and Branislav Vohnout and Elisabeth Wid{\'e}n and Shizuya Yamashita and Maciej Banach and Dan Gaita and Lixin Jiang and Lennart Nilsson and Santos, {Lourdes E.} and Heribert Schunkert and Lale Tokg{\"o}zoğlu and Josip Car and Catapano, {Alberico L.} and Ray, {Kausik K.} and Laura Schreier and Jing Pang and Hans Dieplinger and Gabriele Hanauer-Mader and Johan Desutter and Michel Langlois and Ann Mertens and Ernst Rietzschel and Caroline Wallemacq and Dzenana Isakovic and Dzankovic, {Amra M.} and Jasna Obralija and Lamija Pojskic and Ibrahim Sisic and Ena Stimjanin and Torlak, {Vildana A.} and Jannes, {Cinthia E.} and Krieger, {Jose E.} and Pereira, {Alexandre C.} and Isabelle Ruel and Sylvia Asenjo and Ada Cuevas and Ivan Pe{\'c}in and George Miltiadous and Panayiotou, {Andrie G.} and Michal Vrablik and Marianne Benn and Silver Heinsar and S. B{\'e}liard and Ioanna Gouni-Berthold and Wibke Hengstenberg and Ulrich Julius and Ursula Kassner and Gerald Klose and Christel K{\"o}nig and Wolfgang K{\"o}nig and Britta Otte and Klaus Parhofer and Ulrike Schatz and Nina Schmidt and Elisabeth Steinhagen-Thiessen and Anja Vogt and Christina Antza and Vasilios Athyros and Eleni Bilianou and Amalia Boufidou and George Chrousos and Moses Elisaf and Anastasia Garoufi and Niki Katsiki and Genovefa Kolovou and Vasilios Kotsis and Loukianos Rallidis and Christos Rizos and Emmanouel Skalidis and Ioannis Skoumas and Kostantinos Tziomalos and Shawney, {J. P.S.} and Abbaszadegan, {Mohammad R.} and Majid Aminzadeh and Sousan Hosseini and Moein Mobini and Rahim Vakili and Hossein Zaeri and Ruth Agar and Gerard Boran and Nial Colwell and Vivion Crowley and Maeve Durkin and Damian Griffin and Michael Kelly and Ana Rakovac-Tisdall and Rafael Bitzur and Hofit Cohen and Osnat Eliav and Avishay Ellis and Dov Gavish and Dror Harats and Yaacov Henkin and Hila Knobler and Leah Leavit and Eran Leitersdorf and Daniel Schurr and Shoshi Shpitzen and Auryan Szalat and Marcello Arca and Maurizio Averna and Stefano Bertolini and Sebastiano Calandra and Patrizia Tarugi and Andrejs Erglis and Dainus Gilis and Georgijs Nesterovics and Vita Saripo and Arta Upena-Roze and Sandy Elbitar and S{\'e}lim Jambart and Khoury, {Petra El} and Urte Gargalskaite and Sandra Kutkiene and Alyaa Al-Khateeb and An, {Chua Y.} and Zaliha Ismail and Sazzli Kasim and Ibrahim, {Khairul S.} and Radzi, {Ahmad B.M.} and Kasim, {Noor A.} and Nor, {Noor S.M.} and Ramli, {Anis S.} and Razak, {Suraya A.} and Suhaila Muid and Azhari Rosman and Sanusi, {Abd R.} and Razman, {Aimi Z.} and Nazli, {Sukma A.} and Kek, {Teh L.} and Conrad Azzopardi and {Aguilar Salinas}, {Carlos A.} and Gabriela Gal{\'a}n and Ardon Rubinstein and Maga{\~n}a-Torres, {M. T.} and Alexandro Martagon and Roopa Mehta and Wittekoek, {M. E.} and Isara, {Alphonsus R.} and Obaseki, {Darlington E.} and Ohenhen, {Oluwatoyin A.} and Holven, {Kirsten B.} and Marcin Grucha{\l}a and Marlena Baranowska and Justyna Borowiec-Wolny and Natasza Gilis-Malinowska and Aleksandra Michalska-Grzonkowska and Marcin Pajkowski and Aleksandra Parczewska and Marzena Romanowska-Kocejko and Aneta Str{\'o}{\.z}yk and Marta {\.Z}arczy{\'n}ska-Buchowiecka and Mariola Kleinschmidt and Alves, {Ana C.} and Medeiros, {Ana M.} and Alexandra Ershova and Victoria Korneva and Tatiana Kuznetsova and Pavel Malyshev and Alexey Meshkov and Tatiana Rozhkova and Ljiljana Popovic and Lukac, {Sandra S.} and Ljubica Stosic and Iva Rasulic and Lalic, {Nebojsa M.} and Chua, {Terrance S.J.} and Ting, {Sharon P.L.} and Katarina Raslova and Tadej Battelino and Matija Cevc and Borut Jug and Jernej Kovac and Podkrajsek, {Katarina T.} and Ursa Sustar and Trontelj, {Katja J.} and David Marais and Isla, {Leopoldo Perez de} and Martin, {Fran{\c c}ois J.} and Charng, {Ming Ji} and Chen, {Pei Lung} and Meral Kayik{\c c}ioglu and Nicol{\'a}s Dell{\textquoteright}oca and Graciela Fern{\'a}ndez and Andr{\'e}s Ressia and Ximena Reyes and Mario Zelarayan and Alieva, {Rano B.} and Hoshimov, {Shavkat U.} and Nizamov, {Ulugbek I.} and Kurbanov, {Ravshanbek D.} and Lima-Mart{\'i}nez, {Marcos M.} and Nguyen, {Mai Ngoc Thi} and Do, {Doan Loi} and Kim, {Ngoc Thanh} and Le, {Thanh Tung} and Le, {Hong An}",

year = "2018",

doi = "10.1016/j.atherosclerosis.2018.08.051",

language = "English",

volume = "277",

pages = "234--255",

journal = "Journal of atherosclerosis research",

issn = "1567-5688",

publisher = "Elsevier Ireland Ltd",

}

TY - JOUR

T1 - Overview of the current status of familial hypercholesterolaemia care in over 60 countries - The EAS Familial Hypercholesterolaemia Studies Collaboration (FHSC)

AU - Vallejo-Vaz, Antonio J.

AU - Marco, Martina De

AU - Stevens, Christophe A.T.

AU - Akram, Asif

AU - Freiberger, Tomas

AU - Hovingh, G. Kees

AU - Kastelein, John J.P.

AU - Mata, Pedro

AU - Raal, Frederick J.

AU - Santos, Raul D.

AU - Soran, Handrean

AU - Watts, Gerald F.

AU - Abifadel, Marianne

AU - Aguilar Salinas, Carlos A.

AU - Al-Khnifsawi, Mutaz

AU - Alkindi, Fahad A.

AU - Alnouri, Fahad

AU - Alonso, Rodrigo

AU - Al-Rasadi, Khalid

AU - Al-Sarraf, Ahmad

AU - Ashavaid, Tester F.

AU - Binder, Christoph J.

AU - Bogsrud, Martin P.

AU - Bourbon, Mafalda

AU - Bruckert, Eric

AU - Chlebus, Krzysztof

AU - Corral, Pablo

AU - Descamps, Olivier

AU - Durst, Ronen

AU - Ezhov, Marat

AU - Fras, Zlatko

AU - Genest, Jacques

AU - Groselj, Urh

AU - Harada-Shiba, Mariko

AU - Kayikçioglu, Meral

AU - Lalic, Katarina

AU - Lam, Carolyn S.P.

AU - Latkovskis, Gustavs

AU - Laufs, Ulrich

AU - Liberopoulos, Evangelos

AU - Lin, Jie

AU - Maher, Vincent

AU - Majano, Nelson

AU - Marais, David

AU - März, Winfried

AU - Mirrakhimov, Erkin

AU - Miserez, André R.

AU - Mitchenko, Olena

AU - Nawawi, Hapizah M.

AU - Nordestgaard, Børge G.

AU - Paragh, György

AU - Petrulioniene, Zaneta

AU - Pojskic, Belma

AU - Postadzhiyan, Arman

AU - Reda, Ashraf

AU - Reiner, Željko

AU - Sadoh, Wilson E.

AU - Sahebkar, Amirhossein

AU - Shehab, Abdullah

AU - Shek, Aleksander B.

AU - Stoll, Mario

AU - Su, Ta Chen

AU - Subramaniam, Tavintharan

AU - Susekov, Andrey V.

AU - Symeonides, Phivos

AU - Tilney, Myra

AU - Tomlinson, Brian

AU - Truong, Thanh Huong

AU - Tselepis, Alexandros D.

AU - Tybjærg-Hansen, Anne

AU - Vázquez-Cárdenas, Alejandra

AU - Viigimaa, Margus

AU - Vohnout, Branislav

AU - Widén, Elisabeth

AU - Yamashita, Shizuya

AU - Banach, Maciej

AU - Gaita, Dan

AU - Jiang, Lixin

AU - Nilsson, Lennart

AU - Santos, Lourdes E.

AU - Schunkert, Heribert

AU - Tokgözoğlu, Lale

AU - Car, Josip

AU - Catapano, Alberico L.

AU - Ray, Kausik K.

AU - Schreier, Laura

AU - Pang, Jing

AU - Dieplinger, Hans

AU - Hanauer-Mader, Gabriele

AU - Desutter, Johan

AU - Langlois, Michel

AU - Mertens, Ann

AU - Rietzschel, Ernst

AU - Wallemacq, Caroline

AU - Isakovic, Dzenana

AU - Dzankovic, Amra M.

AU - Obralija, Jasna

AU - Pojskic, Lamija

AU - Sisic, Ibrahim

AU - Stimjanin, Ena

AU - Torlak, Vildana A.

AU - Jannes, Cinthia E.

AU - Krieger, Jose E.

AU - Pereira, Alexandre C.

AU - Ruel, Isabelle

AU - Asenjo, Sylvia

AU - Cuevas, Ada

AU - Pećin, Ivan

AU - Miltiadous, George

AU - Panayiotou, Andrie G.

AU - Vrablik, Michal

AU - Benn, Marianne

AU - Heinsar, Silver

AU - Béliard, S.

AU - Gouni-Berthold, Ioanna

AU - Hengstenberg, Wibke

AU - Julius, Ulrich

AU - Kassner, Ursula

AU - Klose, Gerald

AU - König, Christel

AU - König, Wolfgang

AU - Otte, Britta

AU - Parhofer, Klaus

AU - Schatz, Ulrike

AU - Schmidt, Nina

AU - Steinhagen-Thiessen, Elisabeth

AU - Vogt, Anja

AU - Antza, Christina

AU - Athyros, Vasilios

AU - Bilianou, Eleni

AU - Boufidou, Amalia

AU - Chrousos, George

AU - Elisaf, Moses

AU - Garoufi, Anastasia

AU - Katsiki, Niki

AU - Kolovou, Genovefa

AU - Kotsis, Vasilios

AU - Rallidis, Loukianos

AU - Rizos, Christos

AU - Skalidis, Emmanouel

AU - Skoumas, Ioannis

AU - Tziomalos, Kostantinos

AU - Shawney, J. P.S.

AU - Abbaszadegan, Mohammad R.

AU - Aminzadeh, Majid

AU - Hosseini, Sousan

AU - Mobini, Moein

AU - Vakili, Rahim

AU - Zaeri, Hossein

AU - Agar, Ruth

AU - Boran, Gerard

AU - Colwell, Nial

AU - Crowley, Vivion

AU - Durkin, Maeve

AU - Griffin, Damian

AU - Kelly, Michael

AU - Rakovac-Tisdall, Ana

AU - Bitzur, Rafael

AU - Cohen, Hofit

AU - Eliav, Osnat

AU - Ellis, Avishay

AU - Gavish, Dov

AU - Harats, Dror

AU - Henkin, Yaacov

AU - Knobler, Hila

AU - Leavit, Leah

AU - Leitersdorf, Eran

AU - Schurr, Daniel

AU - Shpitzen, Shoshi

AU - Szalat, Auryan

AU - Arca, Marcello

AU - Averna, Maurizio

AU - Bertolini, Stefano

AU - Calandra, Sebastiano

AU - Tarugi, Patrizia

AU - Erglis, Andrejs

AU - Gilis, Dainus

AU - Nesterovics, Georgijs

AU - Saripo, Vita

AU - Upena-Roze, Arta

AU - Elbitar, Sandy

AU - Jambart, Sélim

AU - Khoury, Petra El

AU - Gargalskaite, Urte

AU - Kutkiene, Sandra

AU - Al-Khateeb, Alyaa

AU - An, Chua Y.

AU - Ismail, Zaliha

AU - Kasim, Sazzli

AU - Ibrahim, Khairul S.

AU - Radzi, Ahmad B.M.

AU - Kasim, Noor A.

AU - Nor, Noor S.M.

AU - Ramli, Anis S.

AU - Razak, Suraya A.

AU - Muid, Suhaila

AU - Rosman, Azhari

AU - Sanusi, Abd R.

AU - Razman, Aimi Z.

AU - Nazli, Sukma A.

AU - Kek, Teh L.

AU - Azzopardi, Conrad

AU - Aguilar Salinas, Carlos A.

AU - Galán, Gabriela

AU - Rubinstein, Ardon

AU - Magaña-Torres, M. T.

AU - Martagon, Alexandro

AU - Mehta, Roopa

AU - Wittekoek, M. E.

AU - Isara, Alphonsus R.

AU - Obaseki, Darlington E.

AU - Ohenhen, Oluwatoyin A.

AU - Holven, Kirsten B.

AU - Gruchała, Marcin

AU - Baranowska, Marlena

AU - Borowiec-Wolny, Justyna

AU - Gilis-Malinowska, Natasza

AU - Michalska-Grzonkowska, Aleksandra

AU - Pajkowski, Marcin

AU - Parczewska, Aleksandra

AU - Romanowska-Kocejko, Marzena

AU - Stróżyk, Aneta

AU - Żarczyńska-Buchowiecka, Marta

AU - Kleinschmidt, Mariola

AU - Alves, Ana C.

AU - Medeiros, Ana M.

AU - Ershova, Alexandra

AU - Korneva, Victoria

AU - Kuznetsova, Tatiana

AU - Malyshev, Pavel

AU - Meshkov, Alexey

AU - Rozhkova, Tatiana

AU - Popovic, Ljiljana

AU - Lukac, Sandra S.

AU - Stosic, Ljubica

AU - Rasulic, Iva

AU - Lalic, Nebojsa M.

AU - Chua, Terrance S.J.

AU - Ting, Sharon P.L.

AU - Raslova, Katarina

AU - Battelino, Tadej

AU - Cevc, Matija

AU - Jug, Borut

AU - Kovac, Jernej

AU - Podkrajsek, Katarina T.

AU - Sustar, Ursa

AU - Trontelj, Katja J.

AU - Marais, David

AU - Isla, Leopoldo Perez de

AU - Martin, François J.

AU - Charng, Ming Ji

AU - Chen, Pei Lung

AU - Kayikçioglu, Meral

AU - Dell’oca, Nicolás

AU - Fernández, Graciela

AU - Ressia, Andrés

AU - Reyes, Ximena

AU - Zelarayan, Mario

AU - Alieva, Rano B.

AU - Hoshimov, Shavkat U.

AU - Nizamov, Ulugbek I.

AU - Kurbanov, Ravshanbek D.

AU - Lima-Martínez, Marcos M.

AU - Nguyen, Mai Ngoc Thi

AU - Do, Doan Loi

AU - Kim, Ngoc Thanh

AU - Le, Thanh Tung

AU - Le, Hong An

PY - 2018

Y1 - 2018

N2 - 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.

AB - 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.

KW - Familial hypercholesterolaemia

KW - FHSC

KW - Primary dyslipidaemia

U2 - 10.1016/j.atherosclerosis.2018.08.051

DO - 10.1016/j.atherosclerosis.2018.08.051

M3 - Journal article

C2 - 30270054

AN - SCOPUS:85053666909

SN - 1567-5688

VL - 277

SP - 234

EP - 255

JO - Journal of atherosclerosis research

JF - Journal of atherosclerosis research

ER -

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

Abstract

Keywords

UN SDGs

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