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 AlSarrafTester 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 Kayikcioglu, Katarina Lalic, Carolyn S.P. Lam, Gustavs Latkovskis, Ulrich Laufs, Evangelos Liberopoulos, Jie Lin, Vincent Maher, Nelson Majano, A. 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

Research output: Contribution to journalArticlepeer-review

54 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 languageEnglish
Pages (from-to)234-255
Number of pages22
JournalAtherosclerosis
Volume277
DOIs
Publication statusPublished - 10 Oct 2018

Keywords

  • Familial hypercholesterolaemia
  • FHSC
  • Primary dyslipidaemia

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