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
Autor(a) principal: | |
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Data de Publicação: | 2016 |
Outros Autores: | , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , |
Tipo de documento: | Artigo |
Idioma: | eng |
Título da fonte: | Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) |
Texto Completo: | http://hdl.handle.net/10400.18/4377 |
Resumo: | 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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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 CollaborationCardiovascular DiseaseFamilial Hypercholesterolaemia Studies CollaborationFamilial HypercholesterolaemiaLDL-CholesterolRegistryStudy DesignDoenças Cardio e Cérebro-vascularesBACKGROUND: 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.The present project has received support from a Pfizer Independent Grant for Learning & Change 2014 (No:16157823) and from investigator initiated unrestricted research grants to the European Atherosclerosis Society from Amgen, MSD, and Sanofi-Aventis. The project in Latvia was supported by the Latvian State Research Programme BIOMEDICINE. The project in Czech Republic was partly supported by grants MZ CR AZV 15-28277A and 16-29084A.ElsevierRepositório Científico do Instituto Nacional de SaúdeEAS Familial Hypercholesterolaemia Studies CollaborationVallejo-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.Bourbon, M.Bruckert, E.Car, J.Ceska, R.Corral, P.Descamps, O.Dieplinger, H.Do, C.T.Durst, R.Ezhov, M.V.Fras, Z.Gaita, D.Gaspar, I.M.Genest, J.Harada-Shiba, M.Jiang, L.Kayikcioglu, M.Lam, C.S.Latkovskis, G.Laufs, U.Liberopoulos, E.Lin, J.Lin, N.Maher, V.Majano, N.Marais, A.D.März, W.Mirrakhimov, E.Miserez, A.R.Mitchenko, O.Nawawi, H.Nilsson, L.Nordestgaard, B.G.Paragh, G.Petrulioniene, Z.Pojskic, B.Reiner, Ž.Sahebkar, A.Santos, L.E.Schunkert, H.Shehab, A.Slimane, M.N.Stoll, M.Su, T.C.Susekov, A.Tilney, M.Tomlinson, B.Tselepis, A.D.Vohnout, B.Widén, E.Yamashita, S.Catapano, A.L.Ray, K.K.2017-02-24T12:15:22Z2016-12-072016-12-07T00:00:00Zinfo:eu-repo/semantics/publishedVersioninfo:eu-repo/semantics/articleapplication/pdfhttp://hdl.handle.net/10400.18/4377engAtheroscler Suppl. 2016 Dec;22:1-32. doi: 10.1016/j.atherosclerosissup.2016.10.001. Epub 2016 Dec 71567-568810.1016/j.atherosclerosissup.2016.10.001info:eu-repo/semantics/openAccessreponame:Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)instname:Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informaçãoinstacron:RCAAP2023-07-20T15:40:14Zoai:repositorio.insa.pt:10400.18/4377Portal AgregadorONGhttps://www.rcaap.pt/oai/openaireopendoar:71602024-03-19T18:39:01.150875Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) - Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informaçãofalse |
dc.title.none.fl_str_mv |
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 |
title |
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 |
spellingShingle |
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 Cardiovascular Disease Familial Hypercholesterolaemia Studies Collaboration Familial Hypercholesterolaemia LDL-Cholesterol Registry Study Design Doenças Cardio e Cérebro-vasculares |
title_short |
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 |
title_full |
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 |
title_fullStr |
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 |
title_full_unstemmed |
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 |
title_sort |
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 |
author |
EAS Familial Hypercholesterolaemia Studies Collaboration |
author_facet |
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. Bourbon, M. Bruckert, E. Car, J. Ceska, R. Corral, P. Descamps, O. Dieplinger, H. Do, C.T. Durst, R. Ezhov, M.V. Fras, Z. Gaita, D. Gaspar, I.M. Genest, J. Harada-Shiba, M. Jiang, L. Kayikcioglu, M. Lam, C.S. Latkovskis, G. Laufs, U. Liberopoulos, E. Lin, J. Lin, N. Maher, V. Majano, N. Marais, A.D. März, W. Mirrakhimov, E. Miserez, A.R. Mitchenko, O. Nawawi, H. Nilsson, L. Nordestgaard, B.G. Paragh, G. Petrulioniene, Z. Pojskic, B. Reiner, Ž. Sahebkar, A. Santos, L.E. Schunkert, H. Shehab, A. Slimane, M.N. Stoll, M. Su, T.C. Susekov, A. Tilney, M. Tomlinson, B. Tselepis, A.D. Vohnout, B. Widén, E. Yamashita, S. Catapano, A.L. Ray, K.K. |
author_role |
author |
author2 |
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. Bourbon, M. Bruckert, E. Car, J. Ceska, R. Corral, P. Descamps, O. Dieplinger, H. Do, C.T. Durst, R. Ezhov, M.V. Fras, Z. Gaita, D. Gaspar, I.M. Genest, J. Harada-Shiba, M. Jiang, L. Kayikcioglu, M. Lam, C.S. Latkovskis, G. Laufs, U. Liberopoulos, E. Lin, J. Lin, N. Maher, V. Majano, N. Marais, A.D. März, W. Mirrakhimov, E. Miserez, A.R. Mitchenko, O. Nawawi, H. Nilsson, L. Nordestgaard, B.G. Paragh, G. Petrulioniene, Z. Pojskic, B. Reiner, Ž. Sahebkar, A. Santos, L.E. Schunkert, H. Shehab, A. Slimane, M.N. Stoll, M. Su, T.C. Susekov, A. Tilney, M. Tomlinson, B. Tselepis, A.D. Vohnout, B. Widén, E. Yamashita, S. Catapano, A.L. Ray, K.K. |
author2_role |
author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author |
dc.contributor.none.fl_str_mv |
Repositório Científico do Instituto Nacional de Saúde |
dc.contributor.author.fl_str_mv |
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. Bourbon, M. Bruckert, E. Car, J. Ceska, R. Corral, P. Descamps, O. Dieplinger, H. Do, C.T. Durst, R. Ezhov, M.V. Fras, Z. Gaita, D. Gaspar, I.M. Genest, J. Harada-Shiba, M. Jiang, L. Kayikcioglu, M. Lam, C.S. Latkovskis, G. Laufs, U. Liberopoulos, E. Lin, J. Lin, N. Maher, V. Majano, N. Marais, A.D. März, W. Mirrakhimov, E. Miserez, A.R. Mitchenko, O. Nawawi, H. Nilsson, L. Nordestgaard, B.G. Paragh, G. Petrulioniene, Z. Pojskic, B. Reiner, Ž. Sahebkar, A. Santos, L.E. Schunkert, H. Shehab, A. Slimane, M.N. Stoll, M. Su, T.C. Susekov, A. Tilney, M. Tomlinson, B. Tselepis, A.D. Vohnout, B. Widén, E. Yamashita, S. Catapano, A.L. Ray, K.K. |
dc.subject.por.fl_str_mv |
Cardiovascular Disease Familial Hypercholesterolaemia Studies Collaboration Familial Hypercholesterolaemia LDL-Cholesterol Registry Study Design Doenças Cardio e Cérebro-vasculares |
topic |
Cardiovascular Disease Familial Hypercholesterolaemia Studies Collaboration Familial Hypercholesterolaemia LDL-Cholesterol Registry Study Design Doenças Cardio e Cérebro-vasculares |
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 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. |
publishDate |
2016 |
dc.date.none.fl_str_mv |
2016-12-07 2016-12-07T00:00:00Z 2017-02-24T12:15:22Z |
dc.type.status.fl_str_mv |
info:eu-repo/semantics/publishedVersion |
dc.type.driver.fl_str_mv |
info:eu-repo/semantics/article |
format |
article |
status_str |
publishedVersion |
dc.identifier.uri.fl_str_mv |
http://hdl.handle.net/10400.18/4377 |
url |
http://hdl.handle.net/10400.18/4377 |
dc.language.iso.fl_str_mv |
eng |
language |
eng |
dc.relation.none.fl_str_mv |
Atheroscler Suppl. 2016 Dec;22:1-32. doi: 10.1016/j.atherosclerosissup.2016.10.001. Epub 2016 Dec 7 1567-5688 10.1016/j.atherosclerosissup.2016.10.001 |
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info:eu-repo/semantics/openAccess |
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openAccess |
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application/pdf |
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Elsevier |
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Elsevier |
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