A Web-Based Registry for Familial Hypercholesterolaemia

被引:14
|
作者
Napier, Kathryn R. [1 ]
Pang, Jing [2 ]
Lamont, Leanne [3 ]
Walker, Caroline E. [3 ]
Dawkins, Hugh J. S. [1 ,4 ,5 ]
Hunter, Adam A. [1 ,3 ]
van Bockxmeer, Frank M. [6 ,7 ]
Watts, Gerald F. [2 ,8 ]
Bellgard, Matthew I. [1 ]
机构
[1] Murdoch Univ, Ctr Comparat Genom, Perth, WA, Australia
[2] Univ Western Australia, Sch Med & Pharmacol, Perth, WA, Australia
[3] Govt Western Australia, Off Populat Hlth Genom, Publ Hlth Div, Dept Hlth, Perth, WA, Australia
[4] Curtin Univ Technol, Ctr Populat Hlth Res, Perth, WA, Australia
[5] Univ Western Australia, Sch Pathol & Lab Med, Perth, WA, Australia
[6] Royal Perth Hosp, Dept Clin Biochem, PathWest Lab Med WA, Perth, WA, Australia
[7] Univ Western Australia, Sch Surg, Perth, WA, Australia
[8] Royal Perth Hosp, Lipid Disorders Clin, Cardiometab Serv, Perth, WA, Australia
来源
HEART LUNG AND CIRCULATION | 2017年 / 26卷 / 06期
基金
英国医学研究理事会; 英国惠康基金;
关键词
Disease registry; Familial hypercholesterolaemia; Interoperable; Model of care; Open source; Registry framework; PREVALENCE; CARE;
D O I
10.1016/j.hlc.2016.10.019
中图分类号
R5 [内科学];
学科分类号
1002 ; 100201 ;
摘要
Familial hypercholesterolaemia (FH) is the most common and serious monogenic disorder of lipoprotein metabolism that leads to premature coronary heart disease. Patients with FH are often under-treated, and many remain undiagnosed. The deployment of the FH Australasia Network Registry is a crucial component of the comprehensive model of care for FH, which aims to provide a standardised, high-quality and cost-effective system of care that is likely to have the highest impact on patient outcomes. The FH Australasia Network Registry was customised using a registry framework that is an open source, interoperable system that enables the efficient customisation and deployment of national and international web-based disease registries that can be modified dynamically as registry requirements evolve. The FH Australasia Network Registry can be employed to improve health services for FH patients across the Australasia-Pacific region, through the collation of data to facilitate clinical service planning, clinical trials, clinical audits, and to inform clinical best practice.
引用
收藏
页码:635 / 639
页数:5
相关论文
共 50 条
  • [1] Familial Hypercholesterolaemia Registry in the MENA Region
    Kolovou, Genovefa
    Watts, Gerald F.
    [J]. CURRENT VASCULAR PHARMACOLOGY, 2020, 18 (01) : 65 - 67
  • [2] ImmPact: A Web-based immunization registry
    不详
    [J]. PUBLIC HEALTH REPORTS, 1998, 113 (06) : 534 - 534
  • [3] A WEB-BASED REGISTRY FOR PATIENTS WITH SARCOIDOSIS
    Gerke, Alicia K.
    Tang, Fan
    Cozier, Yvette C.
    Lash, Michael T.
    Schappet, James
    Phillips, Emily
    Polgreen, Philip M.
    [J]. SARCOIDOSIS VASCULITIS AND DIFFUSE LUNG DISEASES, 2017, 34 (01) : 26 - 34
  • [4] PREVALENCE AND CHARACTERISTICS OF NON -LIPID RISK FACTORS IN FAMILIAL HYPERCHOLESTEROLAEMIA - A STUDY BASED IN THE POPULATION REGISTERED IN THE LATVIAN REGISTRY OF FAMILIAL HYPERCHOLESTEROLAEMIA
    Nikola, Christos
    [J]. HEART, 2019, 105 : A27 - A29
  • [5] A Web-based cleft lip and palate registry
    Douglass, JB
    Becker, S
    Subhani, S
    Mitri, W
    [J]. AMERICAN JOURNAL OF ORTHODONTICS AND DENTOFACIAL ORTHOPEDICS, 2002, 121 (04) : 424 - 425
  • [6] WEB BASED TOOLS TO ASSESS ELIGIBILITY FOR GENETIC TESTING FOR FAMILIAL HYPERCHOLESTEROLAEMIA (FH)
    Ashfield-Watt, P. A. L.
    Haralambos, K.
    Sharif, B.
    Edwards, R.
    Gingell, R.
    Townsend, D.
    Datta, D.
    McDowell, I. F. W.
    [J]. ATHEROSCLEROSIS, 2016, 245 : E245 - E245
  • [7] Clinical features of familial hypercholesterolaemia in children and adults - the PMMHRI Registry
    Lewek, J.
    Starostecka, E.
    Konopka, A.
    Sosnowska, B.
    Banach, M.
    [J]. EUROPEAN HEART JOURNAL, 2021, 42 : 2577 - 2577
  • [8] DEVELOPMENT, EVALUATION AND APPLICATION OF A WEB-BASED IMMUNIZATION REGISTRY SYSTEM
    Theodosiou, M.
    Diomidous, M.
    Velonakis, E.
    Mantas, J.
    [J]. PEDIATRIC RESEARCH, 2010, 68 : 720 - 721
  • [9] Web-based bone marrow transplant registry system.
    Trautenmuller, P.
    Seber, A.
    Hira, A. Y.
    Mello, A. N.
    Castro, H. C.
    Borsato, M.
    Matsuo, S.
    Zuffo, M. K.
    [J]. CYTOTHERAPY, 2006, 8
  • [10] Development of a Web-based bone marrow transplant registry system
    de Mello, Andre Nebel
    Trautenmuller, Patricia
    Hira, Adilson Yuuji
    Seber, Adriana
    de Castro, Helaine Cristina
    Borsato, Maria Luisa
    Matsuo, Sandra Eri
    Zuffo, Marcelo Knorich
    [J]. JOURNAL OF TELEMEDICINE AND TELECARE, 2006, 12 : 64 - 66