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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; AJ. Vallejo-Vaz, A. Akram, SR. Kondapally Seshasai, D. Cole, GF. Watts, GK. Hovingh, JJ. Kastelein, P. Mata, FJ. Raal, RD. Santos, H. Soran, T. Freiberger, M. Abifadel, CA....
Jazyk angličtina Země Nizozemsko
Typ dokumentu časopisecké články, multicentrická studie
Grantová podpora
NV16-29084A
MZ0
CEP - Centrální evidence projektů
- MeSH
- cíle organizace MeSH
- data mining MeSH
- hyperlipoproteinemie typ II diagnóza genetika mortalita terapie MeSH
- integrované poskytování zdravotní péče * organizace a řízení MeSH
- kooperační chování MeSH
- lidé MeSH
- mezinárodní spolupráce * MeSH
- přístup k informacím MeSH
- registrace * MeSH
- ukládání a vyhledávání informací MeSH
- výsledek terapie MeSH
- výzkumný projekt * MeSH
- znalostní mezera * MeSH
- Check Tag
- lidé MeSH
- Publikační typ
- časopisecké články MeSH
- multicentrická studie MeSH
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.
Atherothrombosis Research Centre University of Ioannina Ioannina Greece
Biotechnology Research Centre Mashhad University of Medical Sciences Mashhad Iran
Cantonal Hospital Zenica Bosnia and Herzegovina
Cardinal Santos Medical Centre University of the Philippines Philippine General Hospital Philippines
Cardiovascular and Cell Sciences Research Institute St George's University of London London UK
Cardiovascular Genetic Laboratory Cardiovascular Health Commission Montevideo Uruguay
Cardiovascular Medicine Royal Perth Hospital University of Western Australia Perth Australia
Ceitec Masaryk University Brno Czech Republic
Centre for Cardiovascular Surgery and Transplantation Brno Czech Republic
Centres Hospitaliers Jolimont Haine Saint Paul Belgium
Charles University Prague Prague Czech Republic
CMHS UAE University AlAin United Arab Emirates
Department of Hypertension Medical University of Lodz Lodz Poland
Department of Medical and Health Sciences Linköping University Linköping Sweden
Department of Vascular Medicine Academic Medical Centre Amsterdam The Netherlands
Diagene GmbH Research Institute Reinach Switzerland
Dyslipidaemia Department Institute of Cardiology AMS of Ukraine Ukraine
Ege University Medical School Department of Cardiology Izmir Turkey
Faculty of Health Sciences University of the Witwatersrand Johannesburg South Africa
Faculty of Medicine and Surgery Medical School Mater Dei Hospital University of Malta Malta
Faculty of Medicine University of Basel Basel Switzerland
FASTA University School of Medicine Mar del Plata Argentina
Fundación Hipercolesterolemia Familiar Madrid Spain
Global eHealth Unit School of Public Health Imperial College London London UK
Hadassah Hebrew University Medical Centre Jerusalem Israel
Heart Institute University of São Paulo Medical School Hospital São Paulo Brazil
Hospital Militar de Caracas Caracas Venezuela
Institute for Molecular Medicine Finland FIMM University of Helsinki Helsinki Finland
Institute of Internal Medicine Faculty of Medicine University of Debrecen Hungary
Instituto Nacional de Ciencias Médicas y Nutrición Mexico City Mexico
Kyrgyz State Medical Academy Kyrgyzstan
Lipid Clinic Department of Nutrition Clínica Las Condes Santiago de Chile Chile
McGill University Montreal Canada
Medical Clinic 5 Medical Faculty Mannheim University of Heidelberg Germany
Medical Faculty University of Ljubljana Ljubljana Slovenia
National Advisory Unit on Familial Hypercholesterolemia Oslo University Hospital Norway
National Cerebral and Cardiovascular Centre Research Institute Osaka Japan
National Heart Centre Singapore and Duke National University of Singapore Singapore
Research Unit on Dyslipidaemia and Atherosclerosis Faculty of Medicine of Monastir Tunisia
Rinku General Medical Centre and Osaka University Graduate School of Medicine Osaka Japan
Russian Cardiology Research and Production Centre Moscow Russia
Sultan Qaboos University Hospital Muscat Oman
Universität des Saarlandes Homburg Germany
Universitatea de Medicina si Farmacie Victor Babes din Timisoara Romania
University Department of Medicine Central Manchester University Hospitals Manchester UK
University of Cape Town and National Health Laboratory Service South Africa
University of Ioannina Medical School Ioannina Greece
University of Milan and Multimedica IRCCS Milan Italy
Vietnam Heart Institute Bach Mai Hospital Hanoi Viet Nam
Vilnius University Santariskiu Hospital Centre of Cardiology and Angiology Vilnius Lithuania
Citace poskytuje Crossref.org
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- $a 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 / $c EAS Familial Hypercholesterolaemia Studies Collaboration; AJ. Vallejo-Vaz, A. Akram, SR. Kondapally Seshasai, D. Cole, GF. Watts, GK. Hovingh, JJ. Kastelein, P. Mata, FJ. Raal, RD. Santos, H. Soran, T. Freiberger, M. Abifadel, CA. Aguilar-Salinas, F. Alnouri, R. Alonso, K. Al-Rasadi, M. Banach, MP. Bogsrud, M. Bourbon, E. Bruckert, J. Car, R. Ceska, P. Corral, O. Descamps, H. Dieplinger, CT. Do, R. Durst, MV. Ezhov, Z. Fras, D. Gaita, IM. Gaspar, J. Genest, M. Harada-Shiba, L. Jiang, M. Kayikcioglu, CS. Lam, G. Latkovskis, U. Laufs, E. Liberopoulos, J. Lin, N. Lin, V. Maher, N. Majano, AD. Marais, W. März, E. Mirrakhimov, AR. Miserez, O. Mitchenko, H. Nawawi, L. Nilsson, BG. Nordestgaard, G. Paragh, Z. Petrulioniene, B. Pojskic, Ž. Reiner, A. Sahebkar, LE. Santos, H. Schunkert, A. Shehab, MN. Slimane, M. Stoll, TC. Su, A. Susekov, M. Tilney, B. Tomlinson, AD. Tselepis, B. Vohnout, E. Widén, S. Yamashita, AL. Catapano, KK. Ray,
- 520 9_
- $a 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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- 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_
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