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Overview of the current status of familial hypercholesterolaemia care in over 60 countries - The EAS Familial Hypercholesterolaemia Studies Collaboration (FHSC)
EAS Familial Hypercholesterolaemia Studies Collaboration, AJ. Vallejo-Vaz, M. De Marco, CAT. Stevens, A. Akram, T. Freiberger, GK. Hovingh, JJP. Kastelein, P. Mata, FJ. Raal, RD. Santos, H. Soran, GF. Watts, M. Abifadel, CA. Aguilar-Salinas, M....
Language English Country Ireland
Document type Journal Article, Research Support, Non-U.S. Gov't
- MeSH
- Anticholesteremic Agents adverse effects therapeutic use MeSH
- Biomarkers blood MeSH
- Global Health * MeSH
- Healthcare Disparities MeSH
- Health Services Accessibility MeSH
- Phenotype MeSH
- Genetic Predisposition to Disease MeSH
- Hyperlipoproteinemia Type II blood diagnosis epidemiology therapy MeSH
- Cooperative Behavior MeSH
- Cholesterol, LDL blood MeSH
- Humans MeSH
- International Cooperation * MeSH
- Predictive Value of Tests MeSH
- Prevalence MeSH
- Health Care Surveys MeSH
- Risk Factors MeSH
- Blood Component Removal * adverse effects MeSH
- Treatment Outcome MeSH
- Check Tag
- Humans MeSH
- Publication type
- Journal Article MeSH
- Research Support, Non-U.S. Gov't MeSH
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.
1st Department of Cardiology Medical University of Gdansk Gdańsk Poland
Advanced Lipid Management and Research Centre Ireland
Al Qadisiyah University Faculty of Medicine Department of Internal Medicine Diwaniya City Iraq
Atherothrombosis Research Centre University of Ioannina Ioannina Greece
Bulgarian Society of Cardiology Medical University of Sofia Sofia Bulgaria
Cantonal Hospital Zenica Bosnia and Herzegovina
Cardinal Santos Medical Centre University of the Philippines Philippine General Hospital Philippines
Cardiology Menofia University Egypt
Cardiovascular Prevention Unit Prince Sultan Cardiac Centre Riyadh Riyadh Saudi Arabia
Central European Institute of Technology Masaryk University Brno Czech Republic
Centre for Cardiovascular Surgery and Transplantation Brno Czech Republic
Centres Hospitaliers Jolimont Haine Saint Paul Belgium
Clinic for Endocrinology Diabetes and Metabolic Diseases Clinical Centre of Serbia Belgrade Serbia
Clínica Las Condes Santiago de Chile Chile
Clinical Centre of Cardiology University Clinical Centre Gdańsk Poland
Clinical Research Unit Khoo Teck Puat Hospital Singapore
Coordination Centre for Familial Hyperlipoproteinemias Slovak Medical University Bratislava Slovakia
D A CH Gesellschaft Prävention von Herz Kreislauf Erkrankungen e 5 Hamburg Germany
Department of Cardiology Hacettepe University Ankara Turkey
Department of Cardiology Hanoi Medical University Hanoi Viet Nam
Department of Clinical Biochemistry Rigshospitalet Copenhagen University Hospital Denmark
Department of Hypertension Medical University of Lodz Lodz Poland
Department of Internal Medicine Faculty of Medicine University of Debrecen Debrecen Hungary
Department of Laboratory Medicine Medical University of Vienna Vienna Austria
Department of Medical and Health Sciences Linköping University Linköping Sweden
Department of Medicine Faculty of Medicine and Surgery University of Malta Malta
Department of Pharmacological and Biomolecular Sciences University of Milan Milan Italy
Department of Vascular Medicine Academic Medical Centre Amsterdam the Netherlands
Diabetes Centre Admiralty Medical Centre Singapore
Diagene Research Institute Swiss FH Center Reinach Switzerland
Division of Endocrinology Khoo Teck Puat Hospital Singapore
Duke NUS Medical School Singapore
Ege University Medical School Department of Cardiology Izmir Turkey
Egyptian Association of Vernacular Biology and Atherosclerosis Egypt
Facultad de Medicina Universidad Autónoma de Guadalajara Guadalajara Mexico
Faculty of Health and Medical Sciences University of Copenhagen Denmark
Faculty of Medicine University of Basel Basel Switzerland
Faculty of Medicine University of Belgrade Belgrade Serbia
Faculty of Medicine University of Ioannina Ioannina Greece
FH Australasia Network Australia
Fundación Hipercolesterolemia Familiar Madrid Spain
Hamad Medical Corporation Heart Hospital Doha Qatar
Heart Institute University of Sao Paulo Medical School Hospital Sao Paulo Brazil
Hippocrateon Private Hospital Nicosia Cyprus
Honorary Commission for Cardiovascular Health Montevideo Uruguay
Hospital Israelita Albert Einstein Sao Paulo Brazil
Hospital Militar de Caracas Caracas Venezuela
Institute for Molecular Medicine Finland FIMM University of Helsinki Helsinki Finland
Institute of Nutrition FOZOS Slovak Medical University Bratislava Slovakia
Instituto Nacional de Ciencias Médicas y Nutrición Mexico City Mexico
IRCCS MultiMedica Sesto S Giovanni Milan Italy
Klinik und Poliklinikfür Kardiologie Universitätsklinikum Leipzig Germany
Kyrgyz State Medical Academy Centre of Cardiology and Internal Diseases Biskek Kyrgizstan
Laboratory Department Kuwait Cancer Control Centre Kuwait City Kuwait
Lipid Clinic Mater Dei Hospital Malta
Lipid Disorders Clinic Department of Cardiology Royal Perth Hospital Perth Australia
Medical Faculty University of Ljubljana Ljubljana Slovenia
Medizinische Klinik 5 Medizinische Fakultät Mannheim der Universität Heidelberg Mannheim Germany
National Cardiology Research Centre Ministry of Health of the Russian Federation Russia
National Cerebral and Cardiovascular Centre Research Institute Suita Osaka Japan
National Heart Centre Singapore
Neurogenic Inflammation Research Center Mashhad University of Medical Sciences Mashhad Iran
P D Hinduja National Hospital and Medical Research Centre Mumbai India
Pharmacology Department School of Medicine FASTA University Mar del Plata Argentina
Research Institute of the McGill University Health Centre Montreal Quebec Canada
Rinku General Medical Centre and Osaka University Graduate School of Medicine Osaka Japan
School of Pharmacy Mashhad University of Medical Sciences Mashhad Iran
Sultan Qaboos University Hospital Muscat Oman
Synlab Akademie Synlab Holding Deutschland GmbH Mannheim und Augsburg Germany
Universitatea de Medicina si Farmacie Victor Babes din Timisoara Romania
University of Cape Town and National Health Laboratory Service Cape Town South Africa
Vietnam National Heart Institute Bach Mai Hospital Hanoi Viet Nam
References provided by Crossref.org
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- $a Overview of the current status of familial hypercholesterolaemia care in over 60 countries - The EAS Familial Hypercholesterolaemia Studies Collaboration (FHSC) / $c EAS Familial Hypercholesterolaemia Studies Collaboration, AJ. Vallejo-Vaz, M. De Marco, CAT. Stevens, A. Akram, T. Freiberger, GK. Hovingh, JJP. Kastelein, P. Mata, FJ. Raal, RD. Santos, H. Soran, GF. Watts, M. Abifadel, CA. Aguilar-Salinas, M. Al-Khnifsawi, FA. AlKindi, F. Alnouri, R. Alonso, K. Al-Rasadi, A. Al-Sarraf, TF. Ashavaid, CJ. Binder, MP. Bogsrud, M. Bourbon, E. Bruckert, K. Chlebus, P. Corral, O. Descamps, R. Durst, M. Ezhov, Z. Fras, J. Genest, U. Groselj, M. Harada-Shiba, M. Kayikcioglu, K. Lalic, CSP. Lam, G. Latkovskis, U. Laufs, E. Liberopoulos, J. Lin, V. Maher, N. Majano, AD. Marais, W. März, E. Mirrakhimov, AR. Miserez, O. Mitchenko, HM. Nawawi, BG. Nordestgaard, G. Paragh, Z. Petrulioniene, B. Pojskic, A. Postadzhiyan, A. Reda, Ž. Reiner, WE. Sadoh, A. Sahebkar, A. Shehab, AB. Shek, M. Stoll, TC. Su, T. Subramaniam, AV. Susekov, P. Symeonides, M. Tilney, B. Tomlinson, TH. Truong, AD. Tselepis, A. Tybjærg-Hansen, A. Vázquez-Cárdenas, M. Viigimaa, B. Vohnout, E. Widén, S. Yamashita, M. Banach, D. Gaita, L. Jiang, L. Nilsson, LE. Santos, H. Schunkert, L. Tokgözoğlu, J. Car, AL. Catapano, KK. Ray, EAS Familial Hypercholesterolaemia Studies Collaboration (FHSC) Investigators,
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- $a 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.
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- 700 1_
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- 700 1_
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- 700 1_
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- 700 1_
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- 700 1_
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- 700 1_
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- 700 1_
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- 700 1_
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- 700 1_
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- 700 1_
- $a Binder, Christoph J $u Department of Laboratory Medicine, Medical University of Vienna, Vienna, Austria.
- 700 1_
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- 700 1_
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- 700 1_
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- 700 1_
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- 700 1_
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- 700 1_
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- 700 1_
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- 700 1_
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- 700 1_
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- 700 1_
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- 700 1_
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- 700 1_
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- 700 1_
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- 700 1_
- $a Lalic, Katarina $u Faculty of Medicine, University of Belgrade, Belgrade, Serbia; Clinic for Endocrinology, Diabetes and Metabolic Diseases, Clinical Centre of Serbia, Belgrade, Serbia.
- 700 1_
- $a Lam, Carolyn S P $u National Heart Centre, Singapore; Duke-NUS Medical School, Singapore.
- 700 1_
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- 700 1_
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- 700 1_
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- 700 1_
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- 700 1_
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- 700 1_
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- 700 1_
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- 700 1_
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- 700 1_
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- 700 1_
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- 700 1_
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- 700 1_
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- 700 1_
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- 700 1_
- $a Paragh, György $u Department of Internal Medicine, Faculty of Medicine, University of Debrecen, Debrecen, Hungary.
- 700 1_
- $a Petrulioniene, Zaneta $u Vilnius University, Faculty of Medicine, Vilnius, Lithuania; Clinic of Cardiac and Vascular Diseases, Vilnius University Hospital Santaros Klinikos, Vilnius, Lithuania.
- 700 1_
- $a Pojskic, Belma $u Cantonal Hospital Zenica, Bosnia and Herzegovina.
- 700 1_
- $a Postadzhiyan, Arman $u Bulgarian Society of Cardiology, Medical University of Sofia, Sofia, Bulgaria.
- 700 1_
- $a Reda, Ashraf $u Cardiology, Menofia University, Egypt; Egyptian Association of Vernacular Biology and Atherosclerosis (EAVA), Egypt.
- 700 1_
- $a Reiner, Željko $u Department of Internal Medicine, Division of Metabolic Diseases, University Hospital Centre Zagreb, School of Medicine, University of Zagreb, Zagreb, Croatia.
- 700 1_
- $a Sadoh, Wilson E $u Cardiology Unit, Department of Child Health, University of Benin Teaching Hospital, Benin City, Edo State, Nigeria.
- 700 1_
- $a Sahebkar, Amirhossein $u Biotechnology Research Center, Pharmaceutical Technology Institute, Mashhad University of Medical Sciences, Mashhad, Iran; Neurogenic Inflammation Research Center, Mashhad University of Medical Sciences, Mashhad, Iran; School of Pharmacy, Mashhad University of Medical Sciences, Mashhad, Iran.
- 700 1_
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- 700 1_
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- 700 1_
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- 700 1_
- $a Su, Ta-Chen $u Departments of Internal Medicine and Environmental & Occupational Medicine, Cardiovascular Centre, National Taiwan University Hospital, Taipei, Taiwan.
- 700 1_
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- 700 1_
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- 700 1_
- $a Symeonides, Phivos $u Hippocrateon Private Hospital, Nicosia, Cyprus.
- 700 1_
- $a Tilney, Myra $u Department of Medicine, Faculty of Medicine and Surgery, University of Malta, Malta; Lipid Clinic, Mater Dei Hospital, Malta.
- 700 1_
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- 700 1_
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- 700 1_
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- 700 1_
- $a Tybjærg-Hansen, Anne $u Department of Clinical Biochemistry and the Copenhagen General Population Study, Herlev and Gentofte Hospital, Copenhagen University Hospital, Denmark; Faculty of Health and Medical Sciences, University of Copenhagen, Denmark; Department of Clinical Biochemistry, Rigshospitalet, Copenhagen University Hospital, Denmark.
- 700 1_
- $a Vázquez-Cárdenas, Alejandra $u Facultad de Medicina, Universidad Autónoma de Guadalajara, Guadalajara, Mexico.
- 700 1_
- $a Viigimaa, Margus $u Centre for Cardiovascular Medicine, North Estonia Medical Centre, Tallinn University of Technology, Tallinn, Estonia.
- 700 1_
- $a Vohnout, Branislav $u Institute of Nutrition, FOZOS, Slovak Medical University, Bratislava, Slovakia; Coordination Centre for Familial Hyperlipoproteinemias, Slovak Medical University, Bratislava, Slovakia.
- 700 1_
- $a Widén, Elisabeth $u Institute for Molecular Medicine Finland FIMM, University of Helsinki, Helsinki, Finland.
- 700 1_
- $a Yamashita, Shizuya $u Rinku General Medical Centre and Osaka University Graduate School of Medicine, Osaka, Japan.
- 700 1_
- $a Banach, Maciej $u Department of Hypertension, Medical University of Lodz, Lodz, Poland.
- 700 1_
- $a Gaita, Dan $u Universitatea de Medicina si Farmacie Victor Babes din Timisoara, Romania.
- 700 1_
- $a Jiang, Lixin $u National Clinical Research Centre of Cardiovascular Diseases, Fuwai Hospital, National Centre for Cardiovascular Diseases, Beijing, China.
- 700 1_
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- 700 1_
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- 700 1_
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- 700 1_
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- 700 1_
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- 700 1_
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- 700 1_
- $a Ray, Kausik K $u Imperial Centre for Cardiovascular Disease Prevention (ICCP), Department of Primary Care and Public Health, School of Public Health, Imperial College London, London, United Kingdom.
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- $a EAS Familial Hypercholesterolaemia Studies Collaboration (FHSC) Investigators
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