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

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@article{b6f61cade24a4a0e84ca4fa667fb24d3,
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 = "{The EAS Familial Hypercholeserolaemia Studies Collaboration (FHSC)} and 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 Kayikcioglu 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 Marais, {A. David} and Nordestgaard, {B{\o}rge G.} and Anne Tybj{\ae}rg-Hansen and Marianne Benn and Nina Schmidt",
year = "2018",
month = "10",
day = "10",
doi = "10.1016/j.atherosclerosis.2018.08.051",
language = "English",
volume = "277",
pages = "234--255",
journal = "Atherosclerosis",
issn = "0021-9150",
publisher = "Elsevier Ireland Ltd",

}

RIS

TY - JOUR

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

AU - The EAS Familial Hypercholeserolaemia 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 - Kayikcioglu, 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, A. David

AU - Nordestgaard, Børge G.

AU - Tybjærg-Hansen, Anne

AU - Benn, Marianne

AU - Schmidt, Nina

PY - 2018/10/10

Y1 - 2018/10/10

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

UR - http://www.scopus.com/inward/record.url?scp=85053666909&partnerID=8YFLogxK

U2 - 10.1016/j.atherosclerosis.2018.08.051

DO - 10.1016/j.atherosclerosis.2018.08.051

M3 - Journal article

VL - 277

SP - 234

EP - 255

JO - Atherosclerosis

JF - Atherosclerosis

SN - 0021-9150

ER -

ID: 55676612