TY - JOUR
T1 - Pooling and expanding registries of familial hypercholesterolaemia to assess gaps in care and improve disease management and outcomes
T2 - Rationale and design of the global EAS Familial Hypercholesterolaemia Studies Collaboration
AU - Vallejo-Vaz, Antonio J.
AU - Akram, Asif
AU - Kondapally Seshasai, Sreenivasa Rao
AU - Cole, Della
AU - Watts, Gerald F.
AU - Hovingh, G. Kees
AU - Kastelein, John J.P.
AU - Mata, Pedro
AU - Raal, Frederick J.
AU - Santos, Raul D.
AU - Soran, Handrean
AU - Freiberger, Tomas
AU - Abifadel, Marianne
AU - Aguilar-Salinas, Carlos A.
AU - Alnouri, Fahad
AU - Alonso, Rodrigo
AU - Al-Rasadi, Khalid
AU - Banach, Maciej
AU - Bogsrud, Martin P.
AU - Bourbon, Mafalda
AU - Bruckert, Eric
AU - Car, Josip
AU - Ceska, Richard
AU - Corral, Pablo
AU - Descamps, Olivier
AU - Dieplinger, Hans
AU - Do, Can T.
AU - Durst, Ronen
AU - Ezhov, Marat V.
AU - Fras, Zlatko
AU - Gaita, Dan
AU - Gaspar, Isabel M.
AU - Genest, Jaques
AU - Harada-Shiba, Mariko
AU - Jiang, Lixin
AU - Kayikcioglu, Meral
AU - Lam, Carolyn S.P.
AU - Latkovskis, Gustavs
AU - Laufs, Ulrich
AU - Liberopoulos, Evangelos
AU - Lin, Jie
AU - Lin, Nan
AU - Maher, Vincent
AU - Majano, Nelson
AU - Marais, A. David
AU - März, Winfried
AU - Mirrakhimov, Erkin
AU - Miserez, André R.
AU - Mitchenko, Olena
AU - Nawawi, Hapizah
AU - Nilsson, Lennart
AU - Nordestgaard, Børge G.
AU - Paragh, György
AU - Petrulioniene, Zaneta
AU - Pojskic, Belma
AU - Reiner, Željko
AU - Sahebkar, Amirhossein
AU - Santos, Lourdes E.
AU - Schunkert, Heribert
AU - Shehab, Abdullah
AU - Slimane, M. Naceur
AU - Stoll, Mario
AU - Su, Ta Chen
AU - Susekov, Andrey
AU - Tilney, Myra
AU - Tomlinson, Brian
AU - Tselepis, Alexandros D.
AU - Vohnout, Branislav
AU - Widén, Elisabeth
AU - Yamashita, Shizuya
AU - Catapano, Alberico L.
AU - Ray, Kausik K.
N1 - Publisher Copyright:
© 2016 Elsevier Ireland Ltd
PY - 2016/12/1
Y1 - 2016/12/1
N2 - 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.
AB - 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.
KW - Cardiovascular disease
KW - Familial Hypercholesterolaemia Studies Collaboration
KW - Familial hypercholesterolaemia
KW - LDL-Cholesterol
KW - Registry
KW - Study design
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U2 - 10.1016/j.atherosclerosissup.2016.10.001
DO - 10.1016/j.atherosclerosissup.2016.10.001
M3 - Article
C2 - 27939304
AN - SCOPUS:85006713689
SN - 1567-5688
VL - 22
SP - 1
EP - 32
JO - Atherosclerosis Supplements
JF - Atherosclerosis Supplements
ER -