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
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Date
2016
Journal Title
Journal ISSN
Volume Title
Publisher
Atherosclerosis Supplements
item.page.issn
1567-5688
item.page.isbn
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Atherosclerosis. Supplements, 22, 1–32.
Abstract
Description
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 familialhypercholesterolaemia (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.
Fil: Vallejo-Vaz, Antonio J. Imperial Centre for Cardiovascular Disease Prevention (ICCP), School of Public Health, Imperial College London; Reino Unido.
Fil: Akram, Asif. Global eHealth Unit, School of Public Health, Imperial College London; Reino Unido.
Fil: Akram, Asif. Centre for Population Health Sciences, Lee Kong Chian School of Medicine, Nanyang Technological University; Singapur.
Fil: Kondapally Seshasai, Sreenivasa Rao. Cardiovascular and Cell Sciences Research Institute, St George’s, University of London; Reino Unido.
Fil: Cole, Della. Cardiovascular and Cell Sciences Research Institute, St George’s, University of London; Reino Unido.
Fil: Watts, Gerald F.. Cardiovascular Medicine, Royal Perth Hospital, University of Western Australia; Australia.
Fil: Hovingh, G. Kees. Department of Vascular Medicine, Academic Medical Centre; Países Bajos.
Fil: Kastelein, John J.P.. Department of Vascular Medicine, Academic Medical Centre; Países Bajos.
Fil: Mata, Pedro. Fundación Hipercolesterolemia Familiar; España.
Fil: Raal, Frederick J.. Faculty of Health Sciences, University of the Witwatersrand; Sudáfrica.
Fil: Santos, Raul D.. Heart Institute (InCor), University of São Paulo Medical School Hospital; Brasil.
Fil: Soran, Handrean. University Department of Medicine, Central Manchester University Hospitals; Reino Unido.
Fil: Freiberger, Tomas. Centre for Cardiovascular Surgery and Transplantation; República Checa.
Fil: Freiberger, Tomas. Ceitec, Masaryk University; República Checa.
Fil: Abifadel, Marianne. Laboratory of Biochemistry and Molecular Therapeutics, Faculty of Pharmacy, Saint-Joseph University; Líbano.
Fil: Aguilar-Salinas, Carlos A.. Instituto Nacional de Ciencias Médicas y Nutrición; México.
Fil: Alnouri, Fahad. Cardiovascular Prevention and Rehabilitation Unit, Prince Sultan Cardiac Centre Riyadh; Arabia Saudita.
Fil: Alonso, Rodrigo. Lipid Clinic, Department of Nutrition, Clínica Las Condes; Chile.
Fil: Al-Rasadi, Khalid. Sultan Qaboos University Hospital; Omán.
Fil: Banach, Maciej. Department of Hypertension, Medical University of Lodz; Polonia.
Fil: Bogsrud, Martin P.. National Advisory Unit on Familial Hypercholesterolemia, Oslo University Hospital; Noruega.
Fil: Bourbon, Mafalda. Instituto Nacional de Saúde Doutor Ricardo Jorge and Biosystems & Integrative Sciences Institute (BioISI), Universidade de Lisboa; Portugal.
Fil: Bruckert, Eric. Endocrinologie, métabolisme et prévention cardiovasculaire, Institut E3M et IHU cardiométabolique (ICAN), Hôpital Pitié-Salpêtrière; Francia.
Fil: Car, Josip. Global eHealth Unit, School of Public Health, Imperial College London; Reino Unido.
Fil: Car, Josip. Centre for Population Health Sciences, Lee Kong Chian School of Medicine, Nanyang Technological University; Singapur.
Fil: Ceska, Richard. Charles University in Prague; República Checa.
Fil: Corral, Pablo. Universidad FASTA. Facultad de Medicina; Argentina.
Fil: Descamps, Olivier. Centres Hospitaliers Jolimont; Bélgica.ç
Fil: Dieplinger, Hans. Austrian Atherosclerosis Society, c/o Division of Genetic Epidemiology, Medical University of Innsbruck; Austria.
Fil: Do, Can T.. Vietnam Heart Institute, Bach Mai Hospital; Vietnam.
Fil: Durst, Ronen. Hadassah Hebrew University Medical Centre; Israel.
Fil: Ezhov, Marat V.. Russian Cardiology Research and Production Centre; Rusia.
Fil: Fras, Zlatko. University Medical Centre Ljubljana, Division of Medicine, Preventive Cardiology Unit; Eslovenia.
Fil: Fras, Zlatko. Medical Faculty, University of Ljubljana; Eslovenia.
Fil: Gaita, Dan. Universitatea de Medicina si Farmacie Victor Babes din Timisoara; Rumania.
Fil: Gaspar, Isabel M.. Medical Genetics Department, Centro Hospitalar de Lisboa Ocidental and Genetics Laboratory, Lisbon Medical School, University of Lisbon; Portugal.
Fil: Genest, Jaques. McGill University; Canadá.
Fil: Harada-Shiba, Mariko. National Cerebral and Cardiovascular Centre Research Institute; Japón
Fil: Jiang, Lixin. National Clinical Research Centre of Cardiovascular Diseases, Fuwai Hospital, National Centre for Cardiovascular Diseases; China
Fil: Kayikcioglu, Meral. Ege University Medical School, Department of Cardiology; Turquía.
Fil: Lam, Carolyn S.P.. National Heart Centre Singapore and Duke-National University of Singapore; Singapur.
Fil: Latkovskis, Gustavs. Research Institute of Cardiology and Regenerative Therapy, Faculty of Medicine, University of Latvia, Paul Stradins Clinical University Hospital; Letonia.
Fil: Laufs, Ulrich. Universität des Saarlandes; Alemania.
Fil: Liberopoulos, Evangelos. University of Ioannina Medical School; Grecia.
Fil: Lin, Jie. Beijing Institute of Heart, Lung and Blood Vessel Diseases, Beijing Anzhen Hospital, Capital Medical University; China.
Fil: Lin, Nan. Imperial Centre for Cardiovascular Disease Prevention (ICCP), School of Public Health, Imperial College London; Reino Unido.
Fil: Maher, Vincent. Tallaght Hospital; Irlanda.
Fil: Majano, Nelson. Hospital Militar de Caracas; Venezuela.
Fil: Marais, A. David. University of Cape Town and National Health Laboratory Service; Sudáfrica.
Fil: März, Winfried. Medical Clinic V (Nephrology, Hypertensiology, Rheumatology, Endocrinology, Diabetology), Medical Faculty Mannheim, University of Heidelberg; Alemania.
Fil: Mirrakhimov, Erkin. Kyrgyz State Medical Academy; Kirguistán.
Fil: Miserez, André R.. Diagene GmbH, Research Institute; Suiza.
Fil: Miserez, André R.. Faculty of Medicine, University of Basel; Suiza.
Fil: Mitchenko, Olena. Dyslipidaemia Department, Institute of Cardiology AMS of Ukraine; Ucrania.
Fil: Nawawi, Hapizah. Institute of Pathology, Laboratory and Forensic Medicine (I-PPerForM) and Faculty of Medicine, Universiti Teknologi MARA; Malasia.
Fil: Nilsson, Lennart. Department of Medical and Health Sciences, Linköping University; Suecia.
Fil: Nordestgaard, Børge G.. Herlev and Gentofte Hospital, Copenhagen University Hospital, University of Copenhagen; Dinamarca.
Fil: Paragh, György. Institute of Internal Medicine, Faculty of Medicine, University of Debrecen; Hungría.
Fil: Petrulioniene, Zaneta. Vilnius University Santariskiu Hospital, Centre of Cardiology and Angiology; Lituania
Fil: Pojskic, Belma. Cantonal Hospital, Zenica; Bosnia y Herzegovina.
Fil: Reiner, Zeljko. Department for Metabolic Diseases, University Hospital Centre Zagreb, School of Medicine, University of Zagreb; Croacia.
Fil: Sahebkar, Amirhossein. Biotechnology Research Centre, Mashhad University of Medical Sciences; Irán.
Fil: Santos, Lourdes E.. Cardinal Santos Medical Centre, University of the Philippines – Philippine General Hospital (UP-PGH); Filipinas.
Fil: Schunkert, Heribert. Deutsches Herzzentrum München, Technische Universität München, Deutsches Zentrum für Herz- und Kreislauferkrankungen (DZHK), Munich HeartAlliance; Alemania.
Fil: Shehab, Abdullah. CMHS, UAE University, AlAin; Emiratos Árabes Unidos
Fil: Slimane, M. Naceur. Research Unit on Dyslipidaemia and Atherosclerosis, Faculty of Medicine of Monastir; Túnez.
Fil: Stoll, Mario. Cardiovascular Genetic Laboratory, Cardiovascular Health Commission; Uruguay.
Fil: Su, Ta-Chen. Department of Internal Medicine and Cardiovascular Centre, National Taiwan University Hospital; Taiwán.
Fil: Susekov, Andrey. Department of Clinical Pharmacology and Therapeutics, Russian Medical Academy of Postgraduate Education, Ministry of Health of Russian Federation; Rusia.
Fil: Tilney, Myra. Faculty of Medicine & Surgery, Medical School, Mater Dei Hospital, University of Malta; Malta.
Fil: Tomlinson, Brian. Department of Medicine and Therapeutics, The Chinese University of Hong Kong, Hong Kong Special Administrative Region; China.
Fil: Tselepis, Alexandros D.. Atherothrombosis Research Centre, University of Ioannina; Grecia.
Fil: Vohnout, Branislav. Coordination Centre for Familial Hyperlipoproteinemias, Institute of Nutrition, FOZOS, Slovak Medical University, Department of Epidemiology, School of Medicine, Comenius University; Eslovaquia
Fil: Widén, Elisabeth. Institute for Molecular Medicine Finland FIMM, University of Helsinki; Finlandia.
Fil: Yamashita, Shizuya. Rinku General Medical Centre and Osaka University Graduate School of Medicine; Japón.
Fil: Catapano, Alberico L.. University of Milan and Multimedica IRCCS; Italia.
Fil: Ray, Kausik K.. Imperial Centre for Cardiovascular Disease Prevention (ICCP), School of Public Health, Imperial College London; Reino Unido.
Fil: Vallejo-Vaz, Antonio J. Imperial Centre for Cardiovascular Disease Prevention (ICCP), School of Public Health, Imperial College London; Reino Unido.
Fil: Akram, Asif. Global eHealth Unit, School of Public Health, Imperial College London; Reino Unido.
Fil: Akram, Asif. Centre for Population Health Sciences, Lee Kong Chian School of Medicine, Nanyang Technological University; Singapur.
Fil: Kondapally Seshasai, Sreenivasa Rao. Cardiovascular and Cell Sciences Research Institute, St George’s, University of London; Reino Unido.
Fil: Cole, Della. Cardiovascular and Cell Sciences Research Institute, St George’s, University of London; Reino Unido.
Fil: Watts, Gerald F.. Cardiovascular Medicine, Royal Perth Hospital, University of Western Australia; Australia.
Fil: Hovingh, G. Kees. Department of Vascular Medicine, Academic Medical Centre; Países Bajos.
Fil: Kastelein, John J.P.. Department of Vascular Medicine, Academic Medical Centre; Países Bajos.
Fil: Mata, Pedro. Fundación Hipercolesterolemia Familiar; España.
Fil: Raal, Frederick J.. Faculty of Health Sciences, University of the Witwatersrand; Sudáfrica.
Fil: Santos, Raul D.. Heart Institute (InCor), University of São Paulo Medical School Hospital; Brasil.
Fil: Soran, Handrean. University Department of Medicine, Central Manchester University Hospitals; Reino Unido.
Fil: Freiberger, Tomas. Centre for Cardiovascular Surgery and Transplantation; República Checa.
Fil: Freiberger, Tomas. Ceitec, Masaryk University; República Checa.
Fil: Abifadel, Marianne. Laboratory of Biochemistry and Molecular Therapeutics, Faculty of Pharmacy, Saint-Joseph University; Líbano.
Fil: Aguilar-Salinas, Carlos A.. Instituto Nacional de Ciencias Médicas y Nutrición; México.
Fil: Alnouri, Fahad. Cardiovascular Prevention and Rehabilitation Unit, Prince Sultan Cardiac Centre Riyadh; Arabia Saudita.
Fil: Alonso, Rodrigo. Lipid Clinic, Department of Nutrition, Clínica Las Condes; Chile.
Fil: Al-Rasadi, Khalid. Sultan Qaboos University Hospital; Omán.
Fil: Banach, Maciej. Department of Hypertension, Medical University of Lodz; Polonia.
Fil: Bogsrud, Martin P.. National Advisory Unit on Familial Hypercholesterolemia, Oslo University Hospital; Noruega.
Fil: Bourbon, Mafalda. Instituto Nacional de Saúde Doutor Ricardo Jorge and Biosystems & Integrative Sciences Institute (BioISI), Universidade de Lisboa; Portugal.
Fil: Bruckert, Eric. Endocrinologie, métabolisme et prévention cardiovasculaire, Institut E3M et IHU cardiométabolique (ICAN), Hôpital Pitié-Salpêtrière; Francia.
Fil: Car, Josip. Global eHealth Unit, School of Public Health, Imperial College London; Reino Unido.
Fil: Car, Josip. Centre for Population Health Sciences, Lee Kong Chian School of Medicine, Nanyang Technological University; Singapur.
Fil: Ceska, Richard. Charles University in Prague; República Checa.
Fil: Corral, Pablo. Universidad FASTA. Facultad de Medicina; Argentina.
Fil: Descamps, Olivier. Centres Hospitaliers Jolimont; Bélgica.ç
Fil: Dieplinger, Hans. Austrian Atherosclerosis Society, c/o Division of Genetic Epidemiology, Medical University of Innsbruck; Austria.
Fil: Do, Can T.. Vietnam Heart Institute, Bach Mai Hospital; Vietnam.
Fil: Durst, Ronen. Hadassah Hebrew University Medical Centre; Israel.
Fil: Ezhov, Marat V.. Russian Cardiology Research and Production Centre; Rusia.
Fil: Fras, Zlatko. University Medical Centre Ljubljana, Division of Medicine, Preventive Cardiology Unit; Eslovenia.
Fil: Fras, Zlatko. Medical Faculty, University of Ljubljana; Eslovenia.
Fil: Gaita, Dan. Universitatea de Medicina si Farmacie Victor Babes din Timisoara; Rumania.
Fil: Gaspar, Isabel M.. Medical Genetics Department, Centro Hospitalar de Lisboa Ocidental and Genetics Laboratory, Lisbon Medical School, University of Lisbon; Portugal.
Fil: Genest, Jaques. McGill University; Canadá.
Fil: Harada-Shiba, Mariko. National Cerebral and Cardiovascular Centre Research Institute; Japón
Fil: Jiang, Lixin. National Clinical Research Centre of Cardiovascular Diseases, Fuwai Hospital, National Centre for Cardiovascular Diseases; China
Fil: Kayikcioglu, Meral. Ege University Medical School, Department of Cardiology; Turquía.
Fil: Lam, Carolyn S.P.. National Heart Centre Singapore and Duke-National University of Singapore; Singapur.
Fil: Latkovskis, Gustavs. Research Institute of Cardiology and Regenerative Therapy, Faculty of Medicine, University of Latvia, Paul Stradins Clinical University Hospital; Letonia.
Fil: Laufs, Ulrich. Universität des Saarlandes; Alemania.
Fil: Liberopoulos, Evangelos. University of Ioannina Medical School; Grecia.
Fil: Lin, Jie. Beijing Institute of Heart, Lung and Blood Vessel Diseases, Beijing Anzhen Hospital, Capital Medical University; China.
Fil: Lin, Nan. Imperial Centre for Cardiovascular Disease Prevention (ICCP), School of Public Health, Imperial College London; Reino Unido.
Fil: Maher, Vincent. Tallaght Hospital; Irlanda.
Fil: Majano, Nelson. Hospital Militar de Caracas; Venezuela.
Fil: Marais, A. David. University of Cape Town and National Health Laboratory Service; Sudáfrica.
Fil: März, Winfried. Medical Clinic V (Nephrology, Hypertensiology, Rheumatology, Endocrinology, Diabetology), Medical Faculty Mannheim, University of Heidelberg; Alemania.
Fil: Mirrakhimov, Erkin. Kyrgyz State Medical Academy; Kirguistán.
Fil: Miserez, André R.. Diagene GmbH, Research Institute; Suiza.
Fil: Miserez, André R.. Faculty of Medicine, University of Basel; Suiza.
Fil: Mitchenko, Olena. Dyslipidaemia Department, Institute of Cardiology AMS of Ukraine; Ucrania.
Fil: Nawawi, Hapizah. Institute of Pathology, Laboratory and Forensic Medicine (I-PPerForM) and Faculty of Medicine, Universiti Teknologi MARA; Malasia.
Fil: Nilsson, Lennart. Department of Medical and Health Sciences, Linköping University; Suecia.
Fil: Nordestgaard, Børge G.. Herlev and Gentofte Hospital, Copenhagen University Hospital, University of Copenhagen; Dinamarca.
Fil: Paragh, György. Institute of Internal Medicine, Faculty of Medicine, University of Debrecen; Hungría.
Fil: Petrulioniene, Zaneta. Vilnius University Santariskiu Hospital, Centre of Cardiology and Angiology; Lituania
Fil: Pojskic, Belma. Cantonal Hospital, Zenica; Bosnia y Herzegovina.
Fil: Reiner, Zeljko. Department for Metabolic Diseases, University Hospital Centre Zagreb, School of Medicine, University of Zagreb; Croacia.
Fil: Sahebkar, Amirhossein. Biotechnology Research Centre, Mashhad University of Medical Sciences; Irán.
Fil: Santos, Lourdes E.. Cardinal Santos Medical Centre, University of the Philippines – Philippine General Hospital (UP-PGH); Filipinas.
Fil: Schunkert, Heribert. Deutsches Herzzentrum München, Technische Universität München, Deutsches Zentrum für Herz- und Kreislauferkrankungen (DZHK), Munich HeartAlliance; Alemania.
Fil: Shehab, Abdullah. CMHS, UAE University, AlAin; Emiratos Árabes Unidos
Fil: Slimane, M. Naceur. Research Unit on Dyslipidaemia and Atherosclerosis, Faculty of Medicine of Monastir; Túnez.
Fil: Stoll, Mario. Cardiovascular Genetic Laboratory, Cardiovascular Health Commission; Uruguay.
Fil: Su, Ta-Chen. Department of Internal Medicine and Cardiovascular Centre, National Taiwan University Hospital; Taiwán.
Fil: Susekov, Andrey. Department of Clinical Pharmacology and Therapeutics, Russian Medical Academy of Postgraduate Education, Ministry of Health of Russian Federation; Rusia.
Fil: Tilney, Myra. Faculty of Medicine & Surgery, Medical School, Mater Dei Hospital, University of Malta; Malta.
Fil: Tomlinson, Brian. Department of Medicine and Therapeutics, The Chinese University of Hong Kong, Hong Kong Special Administrative Region; China.
Fil: Tselepis, Alexandros D.. Atherothrombosis Research Centre, University of Ioannina; Grecia.
Fil: Vohnout, Branislav. Coordination Centre for Familial Hyperlipoproteinemias, Institute of Nutrition, FOZOS, Slovak Medical University, Department of Epidemiology, School of Medicine, Comenius University; Eslovaquia
Fil: Widén, Elisabeth. Institute for Molecular Medicine Finland FIMM, University of Helsinki; Finlandia.
Fil: Yamashita, Shizuya. Rinku General Medical Centre and Osaka University Graduate School of Medicine; Japón.
Fil: Catapano, Alberico L.. University of Milan and Multimedica IRCCS; Italia.
Fil: Ray, Kausik K.. Imperial Centre for Cardiovascular Disease Prevention (ICCP), School of Public Health, Imperial College London; Reino Unido.
Citation
EAS Familial Hypercholesterolaemia Studies Collaboration, Vallejo-Vaz, A. J., Akram, A., Kondapally Seshasai, S. R., Cole, D., Watts, G. F., Hovingh, G. K., Kastelein, J. J., Mata, P., Raal, F. J., Santos, R. D., Soran, H., Freiberger, T., Abifadel, M., Aguilar-Salinas, C. A., Alnouri, F., Alonso, R., Al-Rasadi, K., Banach, M., Bogsrud, M. P., … Ray, K. K. (2016). 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. Atherosclerosis. Supplements, 22, 1–32. https://doi.org/10.1016/j.atherosclerosissup.2016.10.001