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
Antonio J. Vallejo‐VazImperial Centre for Cardiovascular Disease Prevention (ICCP), School of Public Health, Imperial College London, London, UKAsif AkramGlobal eHealth Unit, School of Public Health, Imperial College London, London, UKSreenivasa Rao Kondapally SeshasaiCardiovascular and Cell Sciences Research Institute, St George's, University of London, London, UKDella ColeCardiovascular and Cell Sciences Research Institute, St George's, University of London, London, UKGerald F. WattsCardiovascular Medicine, Royal Perth Hospital, University of Western Australia, Perth, AustraliaG. Kees HovinghDepartment of Vascular Medicine, Academic Medical Centre, Amsterdam, The NetherlandsJohn J.P. KasteleinDepartment of Vascular Medicine, Academic Medical Centre, Amsterdam, The NetherlandsPedro MataFrederick J. RaalFaculty of Health Sciences, University of the Witwatersrand, Johannesburg, South AfricaRaúl D. SantosHeart Institute (InCor), University of São Paulo Medical School Hospital, São Paulo, BrazilHandrean SoranUniversity Department of Medicine, Central Manchester University Hospitals, Manchester, UKTomáš FreibergerCeitec, Masaryk University, Brno, Czech RepublicMarianne AbifadelLaboratory of Biochemistry and Molecular Therapeutics, Faculty of Pharmacy, Saint-Joseph University, Beirut, LebanonCarlos A. Aguilar‐SalinasInstituto Nacional de Ciencias Médicas y Nutrición, Mexico City, MexicoFahad AlnouriCardiovascular Prevention and Rehabilitation Unit, Prince Sultan Cardiac Centre Riyadh, Riyadh, Saudi ArabiaRodrigo AlonsoLipid Clinic, Department of Nutrition, Clínica Las Condes, Santiago de Chile, ChileKhalid Al‐RasadiSultan Qaboos University Hospital, Muscat, OmanMaciej BanachDepartment of Hypertension, Medical University of Lodz, Lodz, PolandMartin P. BogsrudNational Advisory Unit on Familial Hypercholesterolemia, Oslo University Hospital, NorwayMafalda BourbonInstituto Nacional de Saúde Doutor Ricardo Jorge and Biosystems & Integrative Sciences Institute (BioISI), Universidade de Lisboa, PortugalÉric BruckertFaculty of Health Sciences, University of the Witwatersrand, Johannesburg, South AfricaJosip CarInstituto Nacional de Ciencias Médicas y Nutrición, Mexico City, MexicoRichard ČeškaCharles University in Prague, Prague, Czech Republic wPablo CorralImperial Centre for Cardiovascular Disease Prevention (ICCP), School of Public Health, Imperial College London, London, UKOlivier DescampsUniversity of Ioannina Medical School, Ioannina, GreeceHans DieplingerAustrian Atherosclerosis Society,Can T.Vietnam Heart Institute, Bach Mai Hospital, Hanoi, Viet NamRonen DurstHadassah Hebrew University Medical Centre, Jerusalem, IsraelМ. В. ЕжовRussian Cardiology Research and Production Centre, Moscow, RussiaZlatko FrasUniversity of Ioannina Medical School, Ioannina, GreeceDan GaițăNational Clinical Research Centre of Cardiovascular Diseases, Fuwai Hospital, National Centre for Cardiovascular Diseases, Beijing, ChinaIsabel GasparUniversity Hospital HeidelbergJaques GenestMcGill University, Montreal, CanadaMariko Harada‐ShibaInstitute of Internal Medicine, Faculty of Medicine, University of Debrecen, HungaryLixin JiangEge University Medical School, Department of Cardiology, Izmir, TurkeyMeral KayıkçıoğluCarolyn S.P. LamUniversity of Cape Town and National Health Laboratory Service, South Africa as Medical Clinic V (Nephrology, Hypertensiology, Rheumatology, Endocrinology, Diabetology), Medical Faculty Mannheim,Gustavs LatkovskisImperial Centre for Cardiovascular Disease Prevention (ICCP), School of Public Health, Imperial College London, London, UKUlrich LaufsUniversity of Ioannina Medical School, Ioannina, GreeceEvangelos LiberopoulosBiotechnology Research Centre, Mashhad University of Medical Sciences, Mashhad, Iran bf Cardinal Santos Medical Centre, University of the Philippines e Philippine General Hospital (UP-PGH), Philippines bg Deutsches Herzzentrum Mu¨nchen, Technische Universita¨t Mu ¨nchen, Deutsches Zentrum fu¨r Herz-und Kreislauferkrankungen (DZHK), Munich Heart Alliance, Germany bh CMHS, UAE University, AlAin, United Arab Emirates bi Research Unit on Dyslipidaemia and Atherosclerosis, Faculty of Medicine of Monastir, Tunisia bj Cardiovascular Genetic Laboratory, Cardiovascular Health Commission, Montevideo, Uruguay bk Department of Internal Medicine and Cardiovascular Centre, National Taiwan University Hospital, Taipei, Taiwan bl Department of Clinical Pharmacology and Therapeutics, Russian Medical Academy of Postgraduate Education, Ministry of Health of Russian Federation, Russia bm Faculty of Medicine & Surgery, Medical School, Mater Dei Hospital, University of Malta, Malta bn Department of Medicine and Therapeutics, The Chinese University of Hong Kong, Hong Kong Special Administrative Region bo Atherothrombosis Research Centre, University of Ioannina, Ioannina, Greece bp Coordination Centre for Familial Hyperlipoproteinemias, Institute of Nutrition, FOZOS, Slovak Medical University, Department of Epidemiology, School of Medicine, Comenius University, Bratislava, Slovakia bq Institute for Molecular Medicine Finland FIMM, University of Helsinki, Helsinki, Finland br Rinku General Medical Centre and Osaka University Graduate School of Medicine, Osaka, Japan bs University of Milan and Multimedica IRCCS, Milan, ItalyJie LinInstituto Nacional de Ciencias Médicas y Nutrición, Mexico City, MexicoNan LinInstituto Nacional de Ciencias Médicas y Nutrición, Mexico City, MexicoVincent MaherTallaght Hospital, Ireland aq Hospital Militar de Caracas, Caracas, VenezuelaNelson MajanoEge University Medical School, Department of Cardiology, Izmir, TurkeyAdéle Maraisav Faculty of Medicine, University of Basel, Basel, SwitzerlandWinfried Märzav Faculty of Medicine, University of Basel, Basel, SwitzerlandErkin М Мirrakhimoval Research Institute of Cardiology and Regenerative Therapy, Faculty of Medicine, University of Latvia, Paul Stradins Clinical University Hospital, Riga, Latvia amAndré R. MiserezOlena MitchenkoHapizah NawawiInstitute of Pathology, Laboratory and Forensic Medicine (I-PPerForM) and Faculty of Medicine, Universiti Teknologi MARA, MalaysiaLennart NilssonDyslipidaemia Department, Institute of Cardiology AMS of Ukraine, UkraineBørge G. NordestgaardUniversity of Heidelberg, Germany at Kyrgyz State Medical Academy, Kyrgyzstan au Diagene GmbH,György ParaghMcGill University, Montreal, CanadaŽaneta PetrulionienėVilnius University Santariskiu Hospital, Centre of Cardiology and Angiology, Vilnius, LithuaniaBelma PojskićImperial Centre for Cardiovascular Disease Prevention (ICCP), School of Public Health, Imperial College London, London, UKŽeljko ReinerDepartment for Metabolic Diseases, University Hospital Centre Zagreb, School of Medicine, University of Zagreb, CroatiaAmirhossein SahebkarBiotechnology Research Centre, Mashhad University of Medical Sciences, Mashhad, Iran bf Cardinal Santos Medical Centre, University of the Philippines e Philippine General Hospital (UP-PGH), Philippines bg Deutsches Herzzentrum Mu¨nchen, Technische Universita¨t Mu ¨nchen, Deutsches Zentrum fu¨r Herz-und Kreislauferkrankungen (DZHK), Munich Heart Alliance, Germany bh CMHS, UAE University, AlAin, United Arab Emirates bi Research Unit on Dyslipidaemia and Atherosclerosis, Faculty of Medicine of Monastir, Tunisia bj Cardiovascular Genetic Laboratory, Cardiovascular Health Commission, Montevideo, Uruguay bk Department of Internal Medicine and Cardiovascular Centre, National Taiwan University Hospital, Taipei, Taiwan bl Department of Clinical Pharmacology and Therapeutics, Russian Medical Academy of Postgraduate Education, Ministry of Health of Russian Federation, Russia bm Faculty of Medicine & Surgery, Medical School, Mater Dei Hospital, University of Malta, Malta bn Department of Medicine and Therapeutics, The Chinese University of Hong Kong, Hong Kong Special Administrative Region bo Atherothrombosis Research Centre, University of Ioannina, Ioannina, Greece bp Coordination Centre for Familial Hyperlipoproteinemias, Institute of Nutrition, FOZOS, Slovak Medical University, Department of Epidemiology, School of Medicine, Comenius University, Bratislava, Slovakia bq Institute for Molecular Medicine Finland FIMM, University of Helsinki, Helsinki, Finland br Rinku General Medical Centre and Osaka University Graduate School of Medicine, Osaka, Japan bs University of Milan and Multimedica IRCCS, Milan, ItalyLourdes Ella G. SantosHeart Institute (InCor), University of São Paulo Medical School Hospital, São Paulo, BrazilHeribert SchunkertDepartment for Metabolic Diseases, University Hospital Centre Zagreb, School of Medicine, University of Zagreb, CroatiaAbdullah ShehabRussian Cardiology Research and Production Centre, Moscow, RussiaMohamed Naceur Slimaneav Faculty of Medicine, University of Basel, Basel, SwitzerlandMario StollImperial Centre for Cardiovascular Disease Prevention (ICCP), School of Public Health, Imperial College London, London, UKTa‐Chen SuImperial Centre for Cardiovascular Disease Prevention (ICCP), School of Public Health, Imperial College London, London, UKAndrey V. SusekovImperial Centre for Cardiovascular Disease Prevention (ICCP), School of Public Health, Imperial College London, London, UKMyra TilneyUniversity of Ioannina Medical School, Ioannina, GreeceBrian TomlinsonUniversity of Ioannina Medical School, Ioannina, GreeceAlexandros D. TselepisUniversity of Ioannina Medical School, Ioannina, GreeceBranislav VohnoutElisabeth WidénBiotechnology Research Centre, Mashhad University of Medical Sciences, Mashhad, Iran bf Cardinal Santos Medical Centre, University of the Philippines e Philippine General Hospital (UP-PGH), Philippines bg Deutsches Herzzentrum Mu¨nchen, Technische Universita¨t Mu ¨nchen, Deutsches Zentrum fu¨r Herz-und Kreislauferkrankungen (DZHK), Munich Heart Alliance, Germany bh CMHS, UAE University, AlAin, United Arab Emirates bi Research Unit on Dyslipidaemia and Atherosclerosis, Faculty of Medicine of Monastir, Tunisia bj Cardiovascular Genetic Laboratory, Cardiovascular Health Commission, Montevideo, Uruguay bk Department of Internal Medicine and Cardiovascular Centre, National Taiwan University Hospital, Taipei, Taiwan bl Department of Clinical Pharmacology and Therapeutics, Russian Medical Academy of Postgraduate Education, Ministry of Health of Russian Federation, Russia bm Faculty of Medicine & Surgery, Medical School, Mater Dei Hospital, University of Malta, Malta bn Department of Medicine and Therapeutics, The Chinese University of Hong Kong, Hong Kong Special Administrative Region bo Atherothrombosis Research Centre, University of Ioannina, Ioannina, Greece bp Coordination Centre for Familial Hyperlipoproteinemias, Institute of Nutrition, FOZOS, Slovak Medical University, Department of Epidemiology, School of Medicine, Comenius University, Bratislava, Slovakia bq Institute for Molecular Medicine Finland FIMM, University of Helsinki, Helsinki, Finland br Rinku General Medical Centre and Osaka University Graduate School of Medicine, Osaka, Japan bs University of Milan and Multimedica IRCCS, Milan, ItalyShizuya YamashitaBiotechnology Research Centre, Mashhad University of Medical Sciences, Mashhad, Iran bf Cardinal Santos Medical Centre, University of the Philippines e Philippine General Hospital (UP-PGH), Philippines bg Deutsches Herzzentrum Mu¨nchen, Technische Universita¨t Mu ¨nchen, Deutsches Zentrum fu¨r Herz-und Kreislauferkrankungen (DZHK), Munich Heart Alliance, Germany bh CMHS, UAE University, AlAin, United Arab Emirates bi Research Unit on Dyslipidaemia and Atherosclerosis, Faculty of Medicine of Monastir, Tunisia bj Cardiovascular Genetic Laboratory, Cardiovascular Health Commission, Montevideo, Uruguay bk Department of Internal Medicine and Cardiovascular Centre, National Taiwan University Hospital, Taipei, Taiwan bl Department of Clinical Pharmacology and Therapeutics, Russian Medical Academy of Postgraduate Education, Ministry of Health of Russian Federation, Russia bm Faculty of Medicine & Surgery, Medical School, Mater Dei Hospital, University of Malta, Malta bn Department of Medicine and Therapeutics, The Chinese University of Hong Kong, Hong Kong Special Administrative Region bo Atherothrombosis Research Centre, University of Ioannina, Ioannina, Greece bp Coordination Centre for Familial Hyperlipoproteinemias, Institute of Nutrition, FOZOS, Slovak Medical University, Department of Epidemiology, School of Medicine, Comenius University, Bratislava, Slovakia bq Institute for Molecular Medicine Finland FIMM, University of Helsinki, Helsinki, Finland br Rinku General Medical Centre and Osaka University Graduate School of Medicine, Osaka, Japan bs University of Milan and Multimedica IRCCS, Milan, ItalyAlberico L. CatapanoUniversity of Ioannina Medical School, Ioannina, GreeceKausik K. RayImperial Centre for Cardiovascular Disease Prevention (ICCP), School of Public Health, Imperial College London, London, UK
2016en
ABI
Аннотация
BACKGROUND: 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. METHODS: The EAS FHSC will maximise the potential exploitation of currently available and future FH data (retrospective and prospective) by bringing together regional/national/international data sources with access to individuals with a clinical and/or genetic diagnosis of heterozygous or homozygous FH. A novel bespoke electronic platform and FH Data Warehouse will be developed to allow secure data sharing, validation, cleaning, pooling, harmonisation and analysis irrespective of the source or format. Standard statistical procedures will allow us to investigate cross-sectional associations, patterns of real-world practice, trends over time, and analyse risk and outcomes (e.g. cardiovascular outcomes, all-cause death), accounting for potential confounders and subgroup effects. CONCLUSIONS: The EAS FHSC represents an excellent opportunity to integrate individual efforts across the world to tackle the global burden of FH. The information garnered from the registry will help reduce gaps in knowledge, inform best practices, assist in clinical trials design, support clinical guidelines and policies development, and ultimately improve the care of FH patients.
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