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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

2016-12-07Journal article Open access
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dc.contributor.authorEAS Familial Hypercholesterolaemia Studies Collaboration
dc.contributor.authorVallejo-Vaz, A.J.
dc.contributor.authorAkram, A.
dc.contributor.authorKondapally Seshasai, S.R.
dc.contributor.authorCole, D.
dc.contributor.authorWatts, G.F.
dc.contributor.authorHovingh, G.K.
dc.contributor.authorKastelein, J.J.
dc.contributor.authorMata, P.
dc.contributor.authorRaal, F.J.
dc.contributor.authorSantos, R.D.
dc.contributor.authorSoran, H.
dc.contributor.authorFreiberger, T.
dc.contributor.authorAbifadel, M.
dc.contributor.authorAguilar-Salinas, C.A.
dc.contributor.authorAlnouri, F.
dc.contributor.authorAlonso, R.
dc.contributor.authorAl-Rasadi, K.
dc.contributor.authorBanach, M.
dc.contributor.authorBogsrud, M.P.
dc.contributor.authorBourbon, M.
dc.contributor.authorBruckert, E.
dc.contributor.authorCar, J.
dc.contributor.authorCeska, R.
dc.contributor.authorCorral, P.
dc.contributor.authorDescamps, O.
dc.contributor.authorDieplinger, H.
dc.contributor.authorDo, C.T.
dc.contributor.authorDurst, R.
dc.contributor.authorEzhov, M.V.
dc.contributor.authorFras, Z.
dc.contributor.authorGaita, D.
dc.contributor.authorGaspar, I.M.
dc.contributor.authorGenest, J.
dc.contributor.authorHarada-Shiba, M.
dc.contributor.authorJiang, L.
dc.contributor.authorKayikcioglu, M.
dc.contributor.authorLam, C.S.
dc.contributor.authorLatkovskis, G.
dc.contributor.authorLaufs, U.
dc.contributor.authorLiberopoulos, E.
dc.contributor.authorLin, J.
dc.contributor.authorLin, N.
dc.contributor.authorMaher, V.
dc.contributor.authorMajano, N.
dc.contributor.authorMarais, A.D.
dc.contributor.authorMärz, W.
dc.contributor.authorMirrakhimov, E.
dc.contributor.authorMiserez, A.R.
dc.contributor.authorMitchenko, O.
dc.contributor.authorNawawi, H.
dc.contributor.authorNilsson, L.
dc.contributor.authorNordestgaard, B.G.
dc.contributor.authorParagh, G.
dc.contributor.authorPetrulioniene, Z.
dc.contributor.authorPojskic, B.
dc.contributor.authorReiner, Ž.
dc.contributor.authorSahebkar, A.
dc.contributor.authorSantos, L.E.
dc.contributor.authorSchunkert, H.
dc.contributor.authorShehab, A.
dc.contributor.authorSlimane, M.N.
dc.contributor.authorStoll, M.
dc.contributor.authorSu, T.C.
dc.contributor.authorSusekov, A.
dc.contributor.authorTilney, M.
dc.contributor.authorTomlinson, B.
dc.contributor.authorTselepis, A.D.
dc.contributor.authorVohnout, B.
dc.contributor.authorWidén, E.
dc.contributor.authorYamashita, S.
dc.contributor.authorCatapano, A.L.
dc.contributor.authorRay, K.K.
dc.date.accessioned2017-02-24T12:15:22Z
dc.date.available2017-02-24T12:15:22Z
dc.date.issued2016-12-07
dc.description.abstractBACKGROUND: 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.pt_PT
dc.description.sponsorshipThe 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.pt_PT
dc.description.versioninfo:eu-repo/semantics/publishedVersionpt_PT
dc.identifier.citationAtheroscler Suppl. 2016 Dec;22:1-32. doi: 10.1016/j.atherosclerosissup.2016.10.001. Epub 2016 Dec 7pt_PT
dc.identifier.doi10.1016/j.atherosclerosissup.2016.10.001pt_PT
dc.identifier.issn1567-5688
dc.identifier.urihttp://hdl.handle.net/10400.18/4377
dc.language.isoengpt_PT
dc.peerreviewedyespt_PT
dc.publisherElsevierpt_PT
dc.relation.publisherversionhttp://www.sciencedirect.com/science/article/pii/S1567568816300496pt_PT
dc.rights.urihttp://creativecommons.org/licenses/by-nc-nd/4.0/pt_PT
dc.subjectCardiovascular Diseasept_PT
dc.subjectFamilial Hypercholesterolaemia Studies Collaborationpt_PT
dc.subjectFamilial Hypercholesterolaemiapt_PT
dc.subjectLDL-Cholesterolpt_PT
dc.subjectRegistrypt_PT
dc.subjectStudy Designpt_PT
dc.subjectDoenças Cardio e Cérebro-vascularespt_PT
dc.titlePooling 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 Collaborationpt_PT
dc.typejournal article
dspace.entity.typePublication
oaire.citation.endPage32pt_PT
oaire.citation.startPage1pt_PT
oaire.citation.titleAtherosclerosis. Supplementspt_PT
oaire.citation.volume22pt_PT
rcaap.rightsopenAccesspt_PT
rcaap.typearticlept_PT

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