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Pooling and expanding registries of familial hypercholesterolaemia to assess gaps in care and improve disease management and outcomes: Rationale and design of the global EAS Familial Hypercholesterolaemia Studies Collaboration

EAS Familial Hypercholesterolaemia Studies Collaboration , Vallejo-Vaz AJ 1 , Akram A 2 , Kondapally Seshasai SR 3 , Cole D 3 , Watts GF 4 Show all authors , Hovingh GK 5 , Kastelein JJ 5 , Mata P 6 , Raal FJ 7 , Santos RD 8 , Soran H 9 , Freiberger T 10 , Abifadel M 11 , Aguilar-Salinas CA 12 , Alnouri F 13 , Alonso R 14 , Al-Rasadi K 15 , Banach M 16 , Bogsrud MP 17 , Bourbon M 18 , Bruckert E 19 , Car J 2 , Ceska R 20 , Corral P 21 , Descamps O 22 , Dieplinger H 23 , Do CT 24 , Durst R 25 , Ezhov MV 26 , Fras Z 27 , Gaita D 28 , Gaspar IM 29 , Genest J 30 , Harada-Shiba M 31 , Jiang L 32 , Kayikcioglu M 33 , Lam CS 34 , Latkovskis G 35 , Laufs U 36 , Liberopoulos E 37 , Lin J 38 , Lin N 39 , Maher V 40 , Majano N 41 , Marais AD 42 , März W 43 , Mirrakhimov E 44 , Miserez AR 45 , Mitchenko O 46 , Nawawi H 47 , Nilsson L 48 , Nordestgaard BG 49 , Paragh G 50 , Petrulioniene Z 51 , Pojskic B 52 , Reiner Ž 53 , Sahebkar A 54 , Santos LE 55 , Schunkert H 56 , Shehab A 57 , Slimane MN 58 , Stoll M 59 , Su TC 60 , Susekov A 61 , Tilney M 62 , Tomlinson B 63 , Tselepis AD 64 , Vohnout B 65 , Widén E 66 , Yamashita S 67 , Catapano AL 68 , Ray KK 39

Affiliations 

  • 1 Imperial Centre for Cardiovascular Disease Prevention (ICCP), School of Public Health, Imperial College London, London, UK. Electronic address: a.vallejo-vaz@imperial.ac.uk
  • 2 Global eHealth Unit, School of Public Health, Imperial College London, London, UK; Centre for Population Health Sciences, Lee Kong Chian School of Medicine, Nanyang Technological University, Singapore
  • 3 Cardiovascular and Cell Sciences Research Institute, St George's, University of London, London, UK
  • 4 Cardiovascular Medicine, Royal Perth Hospital, University of Western Australia, Perth, Australia
  • 5 Department of Vascular Medicine, Academic Medical Centre, Amsterdam, The Netherlands
  • 6 Fundación Hipercolesterolemia Familiar, Madrid, Spain
  • 7 Faculty of Health Sciences, University of the Witwatersrand, Johannesburg, South Africa
  • 8 Heart Institute (InCor), University of São Paulo Medical School Hospital, São Paulo, Brazil
  • 9 University Department of Medicine, Central Manchester University Hospitals, Manchester, UK
  • 10 Centre for Cardiovascular Surgery and Transplantation, Brno, Czech Republic; Ceitec, Masaryk University, Brno, Czech Republic
  • 11 Laboratory of Biochemistry and Molecular Therapeutics, Faculty of Pharmacy, Saint-Joseph University, Beirut, Lebanon
  • 12 Instituto Nacional de Ciencias Médicas y Nutrición, Mexico City, Mexico
  • 13 Cardiovascular Prevention and Rehabilitation Unit, Prince Sultan Cardiac Centre Riyadh, Riyadh, Saudi Arabia
  • 14 Lipid Clinic, Department of Nutrition, Clínica Las Condes, Santiago de Chile, Chile
  • 15 Sultan Qaboos University Hospital, Muscat, Oman
  • 16 Department of Hypertension, Medical University of Lodz, Lodz, Poland
  • 17 National Advisory Unit on Familial Hypercholesterolemia, Oslo University Hospital, Norway
  • 18 Instituto Nacional de Saúde Doutor Ricardo Jorge and Biosystems & Integrative Sciences Institute (BioISI), Universidade de Lisboa, Portugal
  • 19 Endocrinologie, métabolisme et prévention cardiovasculaire, Institut E3M et IHU cardiométabolique (ICAN), Hôpital Pitié-Salpêtrière, Paris, France
  • 20 Charles University in Prague, Prague, Czech Republic
  • 21 FASTA University, School of Medicine, Mar del Plata, Argentina
  • 22 Centres Hospitaliers Jolimont, Haine Saint-Paul, Belgium
  • 23 Austrian Atherosclerosis Society, c/o Division of Genetic Epidemiology, Medical University of Innsbruck, Innsbruck, Austria
  • 24 Vietnam Heart Institute, Bach Mai Hospital, Hanoi, Viet Nam
  • 25 Hadassah Hebrew University Medical Centre, Jerusalem, Israel
  • 26 Russian Cardiology Research and Production Centre, Moscow, Russia
  • 27 University Medical Centre Ljubljana, Division of Medicine, Preventive Cardiology Unit, Ljubljana, Slovenia; Medical Faculty, University of Ljubljana, Ljubljana, Slovenia
  • 28 Universitatea de Medicina si Farmacie Victor Babes din Timisoara, Romania
  • 29 Medical Genetics Department, Centro Hospitalar de Lisboa Ocidental and Genetics Laboratory, Lisbon Medical School, University of Lisbon, Portugal
  • 30 McGill University, Montreal, Canada
  • 31 National Cerebral and Cardiovascular Centre Research Institute, Osaka, Japan
  • 32 National Clinical Research Centre of Cardiovascular Diseases, Fuwai Hospital, National Centre for Cardiovascular Diseases, Beijing, China
  • 33 Ege University Medical School, Department of Cardiology, Izmir, Turkey
  • 34 National Heart Centre Singapore and Duke-National University of Singapore, Singapore
  • 35 Research Institute of Cardiology and Regenerative Therapy, Faculty of Medicine, University of Latvia, Paul Stradins Clinical University Hospital, Riga, Latvia
  • 36 Universität des Saarlandes, Homburg, Germany
  • 37 University of Ioannina Medical School, Ioannina, Greece
  • 38 Beijing Institute of Heart, Lung and Blood Vessel Diseases, Beijing Anzhen Hospital, Capital Medical University, Beijing, China
  • 39 Imperial Centre for Cardiovascular Disease Prevention (ICCP), School of Public Health, Imperial College London, London, UK
  • 40 Tallaght Hospital, Ireland
  • 41 Hospital Militar de Caracas, Caracas, Venezuela
  • 42 University of Cape Town and National Health Laboratory Service, South Africa
  • 43 Medical Clinic V (Nephrology, Hypertensiology, Rheumatology, Endocrinology, Diabetology), Medical Faculty Mannheim, University of Heidelberg, Germany
  • 44 Kyrgyz State Medical Academy, Kyrgyzstan
  • 45 Diagene GmbH, Research Institute, Reinach, Switzerland; Faculty of Medicine, University of Basel, Basel, Switzerland
  • 46 Dyslipidaemia Department, Institute of Cardiology AMS of Ukraine, Ukraine
  • 47 Institute of Pathology, Laboratory and Forensic Medicine (I-PPerForM) and Faculty of Medicine, Universiti Teknologi MARA, Malaysia
  • 48 Department of Medical and Health Sciences, Linköping University, Linköping, Sweden
  • 49 Herlev and Gentofte Hospital, Copenhagen University Hospital, University of Copenhagen, Copenhagen, Denmark
  • 50 Institute of Internal Medicine, Faculty of Medicine, University of Debrecen, Hungary
  • 51 Vilnius University Santariskiu Hospital, Centre of Cardiology and Angiology, Vilnius, Lithuania
  • 52 Cantonal Hospital, Zenica, Bosnia and Herzegovina
  • 53 Department for Metabolic Diseases, University Hospital Centre Zagreb, School of Medicine, University of Zagreb, Croatia
  • 54 Biotechnology Research Centre, Mashhad University of Medical Sciences, Mashhad, Iran
  • 55 Cardinal Santos Medical Centre, University of the Philippines - Philippine General Hospital (UP-PGH), Philippines
  • 56 Deutsches Herzzentrum München, Technische Universität München, Deutsches Zentrum für Herz- und Kreislauferkrankungen (DZHK), Munich Heart Alliance, Germany
  • 57 CMHS, UAE University, AlAin, United Arab Emirates
  • 58 Research Unit on Dyslipidaemia and Atherosclerosis, Faculty of Medicine of Monastir, Tunisia
  • 59 Cardiovascular Genetic Laboratory, Cardiovascular Health Commission, Montevideo, Uruguay
  • 60 Department of Internal Medicine and Cardiovascular Centre, National Taiwan University Hospital, Taipei, Taiwan
  • 61 Department of Clinical Pharmacology and Therapeutics, Russian Medical Academy of Postgraduate Education, Ministry of Health of Russian Federation, Russia
  • 62 Faculty of Medicine & Surgery, Medical School, Mater Dei Hospital, University of Malta, Malta
  • 63 Department of Medicine and Therapeutics, The Chinese University of Hong Kong, Hong Kong Special Administrative Region
  • 64 Atherothrombosis Research Centre, University of Ioannina, Ioannina, Greece
  • 65 Coordination Centre for Familial Hyperlipoproteinemias, Institute of Nutrition, FOZOS, Slovak Medical University, Department of Epidemiology, School of Medicine, Comenius University, Bratislava, Slovakia
  • 66 Institute for Molecular Medicine Finland FIMM, University of Helsinki, Helsinki, Finland
  • 67 Rinku General Medical Centre and Osaka University Graduate School of Medicine, Osaka, Japan
  • 68 University of Milan and Multimedica IRCCS, Milan, Italy
Atheroscler Suppl, 2016 Dec;22:1-32.
PMID: 27939304 DOI: 10.1016/j.atherosclerosissup.2016.10.001

Abstract

The potential for global collaborations to better inform public health policy regarding major non-communicable diseases has been successfully demonstrated by several large-scale international consortia. However, the true public health impact of familial hypercholesterolaemia (FH), a common genetic disorder associated with premature cardiovascular disease, is yet to be reliably ascertained using similar approaches. The European Atherosclerosis Society FH Studies Collaboration (EAS FHSC) is a new initiative of international stakeholders which will help establish a global FH registry to generate large-scale, robust data on the burden of FH worldwide.

* Title and MeSH Headings from MEDLINE®/PubMed®, a database of the U.S. National Library of Medicine.

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