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.

Vallejo-Vaz, Antonio J. and Akram, Asif and Kondapally Seshasai, Sreenivasa Rao and Cole, Della and Watts, Gerald F. and Hovingh, G. Kees and Kastelein, John J.P. and Mata, Pedro and Raal, Frederick J. and Santos, Raul D. and Soran, Handrean and Freiberger, Tomas and Abifadel, Marianne and Aguilar-Salinas, Carlos A. and Alnouri, Fahad and Alonso, Rodrigo and Al-Rasadi, Khalid and Banach, Maciej and Bogsrud, Martin P. and Bourbon, Mafalda and Bruckert, Eric and Car, Josip and Ceska, Richard and Corral, Pablo and Descamps, Olivier and Dieplinger, Hans and Do, Can T. and Durst, Ronen and Ezhov, Marat V. and Fras, Zlatko and Gaita, Dan and Gaspar, Isabel M. and Genest, Jaques and Harada-Shiba, Mariko and Jiang, Lixin and Kayikcioglu, Meral and Lam, Carolyn S.P. and Latkovskis, Gustavs and Laufs, Ulrich and Liberopoulos, Evangelos and Lin, Jie and Lin, Nan and Maher, Vincent and Majano, Nelson and Marais, A. David and März, Winfried and Mirrakhimov, Erkin and Miserez, André R. and Mitchenko, Olena and Nawawi, Hapizah and Nilsson, Lennart and Nordestgaard, Børge G. and Paragh, György and Petrulioniene, Zaneta and Pojskic, Belma and Reiner, Željko and Sahebkar, Amirhossein and Santos, Lourdes E. and Schunkert, Heribert and Shehab, Abdullah and Slimane, M. Naceur and Stoll, Mario and Su, Ta-Chen and Susekov, Andrey and Tilney, Myra and Tomlinson, Brian and Tselepis, Alexandros D. and Vohnout, Branislav and Widén, Elisabeth and Yamashita, Shizuya and Catapano, Alberico L. and Ray, Kausik 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. pp. 1-32. ISSN 1567-5688

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Abstract

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.

Item Type: Article
Additional Information: © 2016 Elsevier Ireland Ltd. This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/).
MeSH: Access to Information ; Cooperative Behavior ; Data Mining ; Delivery of Health Care, Integrated/organization & administration ; Humans ; Hyperlipoproteinemia Type II/diagnosis ; Hyperlipoproteinemia Type II/genetics ; Hyperlipoproteinemia Type II/mortality ; Hyperlipoproteinemia Type II/therapy ; Information Storage and Retrieval ; International Cooperation ; Organizational Objectives ; Professional Practice Gaps ; Registries ; Research Design ; Treatment Outcome
Departments: Katedra za internu medicinu
Depositing User: Martina Žužak
Status: Published
Creators:
CreatorsEmail
Vallejo-Vaz, Antonio J.UNSPECIFIED
Akram, AsifUNSPECIFIED
Kondapally Seshasai, Sreenivasa RaoUNSPECIFIED
Cole, DellaUNSPECIFIED
Watts, Gerald F.UNSPECIFIED
Hovingh, G. KeesUNSPECIFIED
Kastelein, John J.P.UNSPECIFIED
Mata, PedroUNSPECIFIED
Raal, Frederick J.UNSPECIFIED
Santos, Raul D.UNSPECIFIED
Soran, HandreanUNSPECIFIED
Freiberger, TomasUNSPECIFIED
Abifadel, MarianneUNSPECIFIED
Aguilar-Salinas, Carlos A.UNSPECIFIED
Alnouri, FahadUNSPECIFIED
Alonso, RodrigoUNSPECIFIED
Al-Rasadi, KhalidUNSPECIFIED
Banach, MaciejUNSPECIFIED
Bogsrud, Martin P.UNSPECIFIED
Bourbon, MafaldaUNSPECIFIED
Bruckert, EricUNSPECIFIED
Car, JosipUNSPECIFIED
Ceska, RichardUNSPECIFIED
Corral, PabloUNSPECIFIED
Descamps, OlivierUNSPECIFIED
Dieplinger, HansUNSPECIFIED
Do, Can T.UNSPECIFIED
Durst, RonenUNSPECIFIED
Ezhov, Marat V.UNSPECIFIED
Fras, ZlatkoUNSPECIFIED
Gaita, DanUNSPECIFIED
Gaspar, Isabel M.UNSPECIFIED
Genest, JaquesUNSPECIFIED
Harada-Shiba, MarikoUNSPECIFIED
Jiang, LixinUNSPECIFIED
Kayikcioglu, MeralUNSPECIFIED
Lam, Carolyn S.P.UNSPECIFIED
Latkovskis, GustavsUNSPECIFIED
Laufs, UlrichUNSPECIFIED
Liberopoulos, EvangelosUNSPECIFIED
Lin, JieUNSPECIFIED
Lin, NanUNSPECIFIED
Maher, VincentUNSPECIFIED
Majano, NelsonUNSPECIFIED
Marais, A. DavidUNSPECIFIED
März, WinfriedUNSPECIFIED
Mirrakhimov, ErkinUNSPECIFIED
Miserez, André R.UNSPECIFIED
Mitchenko, OlenaUNSPECIFIED
Nawawi, HapizahUNSPECIFIED
Nilsson, LennartUNSPECIFIED
Nordestgaard, Børge G.UNSPECIFIED
Paragh, GyörgyUNSPECIFIED
Petrulioniene, ZanetaUNSPECIFIED
Pojskic, BelmaUNSPECIFIED
Reiner, ŽeljkoUNSPECIFIED
Sahebkar, AmirhosseinUNSPECIFIED
Santos, Lourdes E.UNSPECIFIED
Schunkert, HeribertUNSPECIFIED
Shehab, AbdullahUNSPECIFIED
Slimane, M. NaceurUNSPECIFIED
Stoll, MarioUNSPECIFIED
Su, Ta-ChenUNSPECIFIED
Susekov, AndreyUNSPECIFIED
Tilney, MyraUNSPECIFIED
Tomlinson, BrianUNSPECIFIED
Tselepis, Alexandros D.UNSPECIFIED
Vohnout, BranislavUNSPECIFIED
Widén, ElisabethUNSPECIFIED
Yamashita, ShizuyaUNSPECIFIED
Catapano, Alberico L.UNSPECIFIED
Ray, Kausik K.UNSPECIFIED
Date: December 2016
Date Deposited: 22 Mar 2018 10:24
Last Modified: 22 Mar 2018 10:24
Subjects: UNSPECIFIED
Related URLs:
URI: http://medlib.mef.hr/id/eprint/2878

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