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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

The result's identifiers

  • Result code in IS VaVaI

    <a href="https://www.isvavai.cz/riv?ss=detail&h=RIV%2F00064165%3A_____%2F16%3A10330298" target="_blank" >RIV/00064165:_____/16:10330298 - isvavai.cz</a>

  • Alternative codes found

    RIV/00216224:14740/16:00093815 RIV/00216208:11110/16:10330298

  • Result on the web

    <a href="http://dx.doi.org/10.1016/j.atherosclerosissup.2016.10.001" target="_blank" >http://dx.doi.org/10.1016/j.atherosclerosissup.2016.10.001</a>

  • DOI - Digital Object Identifier

    <a href="http://dx.doi.org/10.1016/j.atherosclerosissup.2016.10.001" target="_blank" >10.1016/j.atherosclerosissup.2016.10.001</a>

Alternative languages

  • Result language

    angličtina

  • Original language name

    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

  • Original language description

    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. 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. 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.

  • Czech name

  • Czech description

Classification

  • Type

    J<sub>x</sub> - Unclassified - Peer-reviewed scientific article (Jimp, Jsc and Jost)

  • CEP classification

    FA - Cardiovascular diseases including cardio-surgery

  • OECD FORD branch

Result continuities

  • Project

    <a href="/en/project/NV15-28277A" target="_blank" >NV15-28277A: LDL gene score in the diagnosis of primary hypercholesterolemias and cardiovascular risk assessment</a><br>

  • Continuities

    P - Projekt vyzkumu a vyvoje financovany z verejnych zdroju (s odkazem do CEP)

Others

  • Publication year

    2016

  • Confidentiality

    S - Úplné a pravdivé údaje o projektu nepodléhají ochraně podle zvláštních právních předpisů

Data specific for result type

  • Name of the periodical

    Atherosclerosis Supplements

  • ISSN

    1567-5688

  • e-ISSN

  • Volume of the periodical

    22

  • Issue of the periodical within the volume

    Supplement

  • Country of publishing house

    IE - IRELAND

  • Number of pages

    32

  • Pages from-to

    1-32

  • UT code for WoS article

    000393031600001

  • EID of the result in the Scopus database

    2-s2.0-85006713689