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

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

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 commo...

Full description

Bibliographic Details
Published in:Atherosclerosis Supplements
Main Author: Vallejo-Vaz A.J.; Akram A.; Kondapally Seshasai S.R.; Cole D.; Watts G.F.; Hovingh G.K.; Kastelein J.J.P.; 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.P.; 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.
Format: Article
Language:English
Published: Elsevier Ireland Ltd 2016
Online Access:https://www.scopus.com/inward/record.uri?eid=2-s2.0-85006713689&doi=10.1016%2fj.atherosclerosissup.2016.10.001&partnerID=40&md5=194f72cc1bc38afff94e1105d30ef652
id 2-s2.0-85006713689
spelling 2-s2.0-85006713689
Vallejo-Vaz A.J.; Akram A.; Kondapally Seshasai S.R.; Cole D.; Watts G.F.; Hovingh G.K.; Kastelein J.J.P.; 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.P.; 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.
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
2016
Atherosclerosis Supplements
22

10.1016/j.atherosclerosissup.2016.10.001
https://www.scopus.com/inward/record.uri?eid=2-s2.0-85006713689&doi=10.1016%2fj.atherosclerosissup.2016.10.001&partnerID=40&md5=194f72cc1bc38afff94e1105d30ef652
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. © 2016 Elsevier Ireland Ltd
Elsevier Ireland Ltd
15675688
English
Article
All Open Access; Hybrid Gold Open Access
author Vallejo-Vaz A.J.; Akram A.; Kondapally Seshasai S.R.; Cole D.; Watts G.F.; Hovingh G.K.; Kastelein J.J.P.; 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.P.; 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.
spellingShingle Vallejo-Vaz A.J.; Akram A.; Kondapally Seshasai S.R.; Cole D.; Watts G.F.; Hovingh G.K.; Kastelein J.J.P.; 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.P.; 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.
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_facet Vallejo-Vaz A.J.; Akram A.; Kondapally Seshasai S.R.; Cole D.; Watts G.F.; Hovingh G.K.; Kastelein J.J.P.; 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.P.; 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_sort Vallejo-Vaz A.J.; Akram A.; Kondapally Seshasai S.R.; Cole D.; Watts G.F.; Hovingh G.K.; Kastelein J.J.P.; 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.P.; 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.
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
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
publishDate 2016
container_title Atherosclerosis Supplements
container_volume 22
container_issue
doi_str_mv 10.1016/j.atherosclerosissup.2016.10.001
url https://www.scopus.com/inward/record.uri?eid=2-s2.0-85006713689&doi=10.1016%2fj.atherosclerosissup.2016.10.001&partnerID=40&md5=194f72cc1bc38afff94e1105d30ef652
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. © 2016 Elsevier Ireland Ltd
publisher Elsevier Ireland Ltd
issn 15675688
language English
format Article
accesstype All Open Access; Hybrid Gold Open Access
record_format scopus
collection Scopus
_version_ 1814778508774211584

Similar Items

  • Global perspective of familial hypercholesterolaemia: a cross-sectional study from the EAS Familial Hypercholesterolaemia Studies Collaboration (FHSC)
    by: Vallejo-Vaz A.J.; Stevens C.A.T.; Lyons A.R.M.; Dharmayat K.I.; Freiberger T.; Hovingh G.K.; Mata P.; Raal F.J.; Santos R.D.; Soran H.; Watts G.F.; Abifadel M.; Aguilar-Salinas C.A.; Alhabib K.F.; Alkhnifsawi M.; Almahmeed W.; Alnouri F.; Alonso R.; Al-Rasadi K.; Al-Sarraf A.; Al-Sayed N.; Araujo F.; Ashavaid T.F.; Banach M.; Béliard S.; Benn M.; Binder C.J.; Bogsrud M.P.; Bourbon M.; Chlebus K.; Corral P.; Davletov K.; Descamps O.S.; Durst R.; Ezhov M.; Gaita D.; Genest J.; Groselj U.; Harada-Shiba M.; Holven K.B.; Kayikcioglu M.; Khovidhunkit W.; Lalic K.; Latkovskis G.; Laufs U.; Liberopoulos E.; Lima-Martinez M.M.; Lin J.; Maher V.; Marais A.D.; März W.; Mirrakhimov E.; Miserez A.R.; Mitchenko O.; Nawawi H.; Nordestgaard B.G.; Panayiotou A.G.; Paragh G.; Petrulioniene Z.; Pojskic B.; Postadzhiyan A.; Raslova K.; Reda A.; Reiner Ž.; Sadiq F.; Sadoh W.E.; Schunkert H.; Shek A.B.; Stoll M.; Stroes E.; Su T.-C.; Subramaniam T.; Susekov A.V.; Tilney M.; Tomlinson B.; Truong T.H.; Tselepis A.D.; Tybjærg-Hansen A.; Cárdenas A.V.; Viigimaa M.; Wang L.; Yamashita S.; Tokgozoglu L.; Catapano A.L.; Ray K.K.
    Published: (2021)
  • Overview of the current status of familial hypercholesterolaemia care in over 60 countries - The EAS Familial Hypercholesterolaemia Studies Collaboration (FHSC)
    by: Vallejo-Vaz A.J.; Marco M.D.; Stevens C.A.T.; Akram A.; Freiberger T.; Hovingh G.K.; Kastelein J.J.P.; Mata P.; Raal F.J.; Santos R.D.; Soran H.; Watts G.F.; Abifadel M.; Aguilar-Salinas C.A.; Al-Khnifsawi M.; Alkindi F.A.; Alnouri F.; Alonso R.; Al-Rasadi K.; Al-Sarraf A.; Ashavaid T.F.; Binder C.J.; Bogsrud M.P.; Bourbon M.; Bruckert E.; Chlebus K.; Corral P.; Descamps O.; Durst R.; Ezhov M.; Fras Z.; Genest J.; Groselj U.; Harada-Shiba M.; Kayikcioglu M.; Lalic K.; Lam C.S.P.; Latkovskis G.; Laufs U.; Liberopoulos E.; Lin J.; Maher V.; Majano N.; Marais A.D.; März W.; Mirrakhimov E.; Miserez A.R.; Mitchenko O.; Nawawi H.M.; Nordestgaard B.G.; Paragh G.; Petrulioniene Z.; Pojskic B.; Postadzhiyan A.; Reda A.; Reiner Ž.; Sadoh W.E.; Sahebkar A.; Shehab A.; Shek A.B.; Stoll M.; Su T.-C.; Subramaniam T.; Susekov A.V.; Symeonides P.; Tilney M.; Tomlinson B.; Truong T.-H.; Tselepis A.D.; Tybjærg-Hansen A.; Vázquez-Cárdenas A.; Viigimaa M.; Vohnout B.; Widén E.; Yamashita S.; Banach M.; Gaita D.; Jiang L.; Nilsson L.; Santos L.E.; Schunkert H.; Tokgözoğlu L.; Car J.; Catapano A.L.; Ray K.K.; Schreier L.; Pang J.; Dieplinger H.; Hanauer-Mader G.; Desutter J.; Langlois M.; Mertens A.; Rietzschel E.; Wallemacq C.; Isakovic D.; Dzankovic A.M.; Obralija J.; Pojskic L.; Sisic I.; Stimjanin E.; Torlak V.A.; Jannes C.E.; Krieger J.E.; Pereira A.C.; Ruel I.; Asenjo S.; Cuevas A.; Pećin I.; Miltiadous G.; Panayiotou A.G.; Vrablik M.; Benn M.; Heinsar S.; Béliard S.; Gouni-Berthold I.; Hengstenberg W.; Julius U.; Kassner U.; Klose G.; König C.; König W.; Otte B.; Parhofer K.; Schatz U.; Schmidt N.; Steinhagen-Thiessen E.; Vogt A.; Antza C.; Athyros V.; Bilianou E.; Boufidou A.; Chrousos G.; Elisaf M.; Garoufi A.; Katsiki N.; Kolovou G.; Kotsis V.; Rallidis L.; Rizos C.; Skalidis E.; Skoumas I.; Tziomalos K.; Shawney J.P.S.; Abbaszadegan M.R.; Aminzadeh M.; Hosseini S.; Mobini M.; Vakili R.; Zaeri H.; Agar R.; Boran G.; Colwell N.; Crowley V.; Durkin M.; Griffin D.; Kelly M.; Rakovac-Tisdall A.; Bitzur R.; Cohen H.; Eliav O.; Ellis A.; Gavish D.; Harats D.; Henkin Y.; Knobler H.; Leavit L.; Leitersdorf E.; Schurr D.; Shpitzen S.; Szalat A.; Arca M.; Averna M.; Bertolini S.; Calandra S.; Tarugi P.; Erglis A.; Gilis D.; Nesterovics G.; Saripo V.; Upena-Roze A.; Elbitar S.; Jambart S.; Khoury P.E.; Gargalskaite U.; Kutkiene S.; Al-Khateeb A.; An C.Y.; Ismail Z.; Kasim S.; Ibrahim K.S.; Radzi A.B.M.; Kasim N.A.; Nor N.S.M.; Ramli A.S.; Razak S.A.; Muid S.; Rosman A.; Sanusi A.R.; Razman A.Z.; Nazli S.A.; Kek T.L.; Azzopardi C.; Galán G.; Rubinstein A.; Magaña-Torres M.T.; Martagon A.; Mehta R.; Wittekoek M.E.; Isara A.R.; Obaseki D.E.; Ohenhen O.A.; Holven K.B.; Gruchała M.; Baranowska M.; Borowiec-Wolny J.; Gilis-Malinowska N.; Michalska-Grzonkowska A.; Pajkowski M.; Parczewska A.; Romanowska-Kocejko M.; Stróżyk A.; Żarczyńska-Buchowiecka M.; Kleinschmidt M.; Alves A.C.; Medeiros A.M.; Ershova A.; Korneva V.; Kuznetsova T.; Malyshev P.; Meshkov A.; Rozhkova T.; Popovic L.; Lukac S.S.; Stosic L.; Rasulic I.; Lalic N.M.; Chua T.S.J.; Ting S.P.L.; Raslova K.; Battelino T.; Cevc M.; Jug B.; Kovac J.; Podkrajsek K.T.; Sustar U.; Trontelj K.J.; Marais D.; Isla L.P.; Martin F.J.; Charng M.-J.; Chen P.-L.; Dell’oca N.; Fernández G.; Ressia A.; Reyes X.; Zelarayan M.; Alieva R.B.; Hoshimov S.U.; Nizamov U.I.; Kurbanov R.D.; Lima-Martínez M.M.; Nguyen M.-N.T.; Do D.-L.; Kim N.-T.; Le T.-T.; Le H.-A.
    Published: (2018)
  • International Atherosclerosis Society guidance for implementing best practice in the care of familial hypercholesterolaemia
    by: Watts G.F.; Gidding S.S.; Hegele R.A.; Raal F.J.; Sturm A.C.; Jones L.K.; Sarkies M.N.; Al-Rasadi K.; Blom D.J.; Daccord M.; de Ferranti S.D.; Folco E.; Libby P.; Mata P.; Nawawi H.M.; Ramaswami U.; Ray K.K.; Stefanutti C.; Yamashita S.; Pang J.; Thompson G.R.; Santos R.D.
    Published: (2023)
  • Case-finding and genetic testing for familial hypercholesterolaemia in primary care
    by: Qureshi N.; Akyea R.K.; Dutton B.; Humphries S.E.; Hamid H.A.; Condon L.; Weng S.F.; Kai J.; Roderick P.; Neely D.; Neil A.; Williams S.; Jones M.; Walters K.; Payne K.; Hanratty B.
    Published: (2021)
  • Comparative aspects of the care of familial hypercholesterolemia in the “Ten Countries Study”
    by: Pang J.; Chan D.C.; Hu M.; Muir L.A.; Kwok S.; Charng M.-J.; Florkowski C.M.; George P.M.; Lin J.; Loi D.D.; Marais A.D.; Nawawi H.M.; Gonzalez-Santos L.E.; Su T.-C.; Truong T.H.; Santos R.D.; Soran H.; Tomlinson B.; Yamashita S.; Ademi Z.; Watts G.F.
    Published: (2019)