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

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Vallejo-Vaz, Antonio J.Imperial Coll London, England (author)

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

Article/chapterEnglish2016

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ELSEVIER IRELAND LTD,2016
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LIBRIS-ID:oai:DiVA.org:liu-134993
https://urn.kb.se/resolve?urn=urn:nbn:se:liu:diva-134993URI
https://doi.org/10.1016/j.atherosclerosissup.2016.10.001DOI

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Language:English
Summary in:English

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SwePubSwePub

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Subject category:ref swepub-contenttype
Subject category:art swepub-publicationtype

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Funding Agencies|Pfizer Independent Grant for Learning Change [16157823]; Amgen; MSD; Sanofi-Aventis; Latvian State Research Programme BIOMEDICINE; Czech Republic [MZ CR AZV 15-28277A, 16-29084A]
Background: The potential for global collaborations to better inform public health policy regarding major non-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. (C) 2016 Elsevier Ireland Ltd.

Subject headings and genre

MEDICIN OCH HÄLSOVETENSKAP Klinisk medicin Kardiologi hsv//swe
MEDICAL AND HEALTH SCIENCES Clinical Medicine Cardiac and Cardiovascular Systems hsv//eng
Familial hypercholesterolaemia; LDL-Cholesterol; Cardiovascular disease; Registry; Study design; Familial Hypercholesterolaemia Studies Collaboration

Added entries (persons, corporate bodies, meetings, titles ...)

Akram, AsifImperial Coll London, England; Nanyang Technology University, Singapore (author)
Rao Kondapally Seshasai, SreenivasaSt Georges University of London, England (author)
Cole, DellaSt Georges University of London, England (author)
Watts, Gerald F.University of Western Australia, Australia (author)
Kees Hovingh, G.Academic Medical Centre, Netherlands (author)
Kastelein, John J. P.Academic Medical Centre, Netherlands (author)
Mata, PedroFdn Hipercolesterolemia Familiar, Spain (author)
Raal, Frederick J.University of Witwatersrand, South Africa (author)
Santos, Raul D.University of Sao Paulo, Brazil (author)
Soran, HandreanCentral Manchester University Hospital, England (author)
Freiberger, TomasCentre Cardiovasc Surg and Transplantat, Czech Republic; Masaryk University, Czech Republic (author)
Abifadel, MarianneSt Joseph University, Lebanon (author)
Aguilar-Salinas, Carlos A.Institute Nacl Ciencias Medical and Nutr Salvador Zubiran, Mexico (author)
Alnouri, FahadPrince Sultan Cardiac Centre Riyadh, Saudi Arabia (author)
Alonso, RodrigoClin Las Condes, Chile (author)
Al-Rasadi, KhalidSultan Qaboos University Hospital, Oman (author)
Banach, MaciejMedical University of Lodz, Poland (author)
Bogsrud, Martin P.Oslo University Hospital, Norway (author)
Bourbon, MafaldaUniversity of Lisbon, Portugal; University of Lisbon, Portugal (author)
Bruckert, EricHop La Pitie Salpetriere, France (author)
Car, JosipImperial Coll London, England; Nanyang Technology University, Singapore (author)
Ceska, RichardCharles University of Prague, Czech Republic (author)
Corral, PabloFASTA University, Argentina (author)
Descamps, OlivierCentre Hospital Jolimont, Belgium (author)
Dieplinger, HansMedical University of Innsbruck, Austria (author)
Do, Can T.Bach Mai Hospital, Vietnam (author)
Durst, RonenHadassah Hebrew University, Israel (author)
Ezhov, Marat V.Russian Cardiol Research and Prod Centre, Russia (author)
Fras, ZlatkoUniversity of Medical Centre Ljubljana, Slovenia; University of Ljubljana, Slovenia (author)
Gaita, DanUniversity of Medical and Farm Victor Babes Timisoara, Romania (author)
Gaspar, Isabel M.University of Lisbon, Portugal (author)
Genest, JaquesMcGill University, Canada (author)
Harada-Shiba, MarikoNational Cerebral and Cardiovasc Centre, Japan (author)
Jiang, LixinFuwai Hospital, Peoples R China (author)
Kayikcioglu, MeralEge University, Turkey (author)
Lam, Carolyn S. P.National Heart Centre Singapore, Singapore; Duke National University of Singapore, Singapore (author)
Latkovskis, GustavsUniversity of Latvia, Latvia (author)
Laufs, UlrichUniversity of Saarland, Germany (author)
Liberopoulos, EvangelosUniversity of Ioannina, Greece (author)
Lin, JieCapital Medical University, Peoples R China (author)
Lin, NanImperial Coll London, England (author)
Maher, VincentTallaght Hospital, Ireland (author)
Majano, NelsonHospital Mil Caracas, Venezuela (author)
David Marais, A.University of Cape Town, South Africa; National Health Lab Serv, South Africa (author)
Maerz, WinfriedHeidelberg University, Germany (author)
Mirrakhimov, ErkinKyrgyz State Medical Acad, Kyrgyzstan (author)
Miserez, Andre R.Diagene GmbH, Switzerland; University of Basel, Switzerland (author)
Mitchenko, OlenaInstitute Cardiol AMS Ukraine, Ukraine; University of Teknol MARA, Malaysia (author)
Nawawi, HapizahInstitute Pathol Lab and Forens Medical I PPerForM, Malaysia (author)
Nilsson, LennartLinköpings universitet,Avdelningen för kardiovaskulär medicin,Medicinska fakulteten,Region Östergötland, Kardiologiska kliniken US(Swepub:liu)lenni29 (author)
Nordestgaard, Borge G.University of Copenhagen, Denmark (author)
Paragh, GyorgyUniversity of Debrecen, Hungary (author)
Petrulioniene, ZanetaVilnius University, Lithuania (author)
Pojskic, BelmaCantonal Hospital, Bosnia and Herceg (author)
Reiner, ZeljkoUniversity of Zagreb, Croatia (author)
Sahebkar, AmirhosseinMashhad University of Medical Science, Iran (author)
Santos, Lourdes E.University of Philippines, Philippines (author)
Schunkert, HeribertTechnical University of Munich, Germany (author)
Shehab, AbdullahUAE University, U Arab Emirates (author)
Naceur Slimane, M.Fac Medical Monastir, Tunisia (author)
Stoll, MarioCardiovasc Health Commiss, Uruguay (author)
Su, Ta-ChenNational Taiwan University Hospital, Taiwan; National Taiwan University Hospital, Taiwan (author)
Susekov, AndreyRussian Medical Academic Postgrad Educ, Russia (author)
Tilney, MyraUniversity of Malta, Malta (author)
Tomlinson, BrianChinese University of Hong Kong, Peoples R China (author)
Tselepis, Alexandros D.University of Ioannina, Greece (author)
Vohnout, BranislavComenius University, Slovakia (author)
Widen, ElisabethUniversity of Helsinki, Finland (author)
Yamashita, ShizuyaRinku Gen Medical Centre, Japan; Osaka University, Japan (author)
Catapano, Alberico L.University of Milan, Italy; Multimed IRCCS, Italy (author)
Ray, Kausik K.Imperial Coll London, England (author)
Imperial Coll London, EnglandImperial Coll London, England; Nanyang Technology University, Singapore (creator_code:org_t)

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By the author/editor: Vallejo-Vaz, Ant ...; Akram, Asif; Rao Kondapally S ...; Cole, Della; Watts, Gerald F.; Kees Hovingh, G.; show more...; Kastelein, John ...; Mata, Pedro; Raal, Frederick ...; Santos, Raul D.; Soran, Handrean; Freiberger, Toma ...; Abifadel, Marian ...; Aguilar-Salinas, ...; Alnouri, Fahad; Alonso, Rodrigo; Al-Rasadi, Khali ...; Banach, Maciej; Bogsrud, Martin ...; Bourbon, Mafalda; Bruckert, Eric; Car, Josip; Ceska, Richard; Corral, Pablo; Descamps, Olivie ...; Dieplinger, Hans; Do, Can T.; Durst, Ronen; Ezhov, Marat V.; Fras, Zlatko; Gaita, Dan; Gaspar, Isabel M ...; Genest, Jaques; Harada-Shiba, Ma ...; Jiang, Lixin; Kayikcioglu, Mer ...; Lam, Carolyn S. ...; Latkovskis, Gust ...; Laufs, Ulrich; Liberopoulos, Ev ...; Lin, Jie; Lin, Nan; Maher, Vincent; Majano, Nelson; David Marais, A.; Maerz, Winfried; Mirrakhimov, Erk ...; Miserez, Andre R ...; Mitchenko, Olena; Nawawi, Hapizah; Nilsson, Lennart; Nordestgaard, Bo ...; Paragh, Gyorgy; Petrulioniene, Z ...; Pojskic, Belma; Reiner, Zeljko; Sahebkar, Amirho ...; Santos, Lourdes ...; Schunkert, Herib ...; Shehab, Abdullah; Naceur Slimane, ...; Stoll, Mario; Su, Ta-Chen; Susekov, Andrey; Tilney, Myra; Tomlinson, Brian; Tselepis, Alexan ...; Vohnout, Branisl ...; Widen, Elisabeth; Yamashita, Shizu ...; Catapano, Alberi ...; Ray, Kausik K.; show less...

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