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PubMed

Záznam pochází z PubMed

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. 2016 Dec ; 22 () : 1-32. [epub] 20161207

Atheroscler Suppl
ISSN 1878-5050 | 1567-5688
Zdroj

Jazyk angličtina Země Nizozemsko Médium print-electronic

Typ dokumentu časopisecké články, multicentrická studie

Perzistentní odkaz https://www.medvik.cz/link/pmid27939304

PubMed 27939304
DOI 10.1016/j.atherosclerosissup.2016.10.001
PII: S1567-5688(16)30049-6
Knihovny.cz E-zdroje

Klíčová slova
Cardiovascular disease, Familial Hypercholesterolaemia Studies Collaboration, Familial hypercholesterolaemia, LDL-Cholesterol, Registry, Study design,
MeSH
cíle organizace MeSH
data mining MeSH
hyperlipoproteinemie typ II diagnóza genetika mortalita terapie MeSH
integrované poskytování zdravotní péče * organizace a řízení MeSH
kooperační chování MeSH
lidé MeSH
mezinárodní spolupráce * MeSH
přístup k informacím MeSH
registrace * MeSH
ukládání a vyhledávání informací MeSH
výsledek terapie MeSH
výzkumný projekt * MeSH
znalostní mezera * MeSH
Check Tag
lidé MeSH
Publikační typ
časopisecké články MeSH
multicentrická studie MeSH

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.

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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