A Web-Based Registry for Familial Hypercholesterolaemia.
Heart Lung Circ
; 26(6): 635-639, 2017 Jun.
Article
em En
| MEDLINE
| ID: mdl-28065523
ABSTRACT
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.
Palavras-chave
Texto completo:
1
Coleções:
01-internacional
Base de dados:
MEDLINE
Assunto principal:
Sistema de Registros
/
Internet
/
Atenção à Saúde
/
Hiperlipoproteinemia Tipo II
Tipo de estudo:
Guideline
Limite:
Female
/
Humans
/
Male
País/Região como assunto:
Oceania
Idioma:
En
Revista:
Heart Lung Circ
Assunto da revista:
ANGIOLOGIA
/
CARDIOLOGIA
Ano de publicação:
2017
Tipo de documento:
Article
País de afiliação:
Austrália