Journal article
Role of international registries in enhancing the care of familial hypercholesterolaemia
International Journal of Evidence-Based Healthcare, Vol.11(2), pp.134-139
2013
Abstract
Familial hypercholesterolaemia (FH) is a relatively common genetic disorder associated with high risk of coronary heart disease that is preventable by early diagnosis and treatment. In a previous article, we reviewed the evidence for clinical management, models of care and health economic evaluations. The present commentary emphasises that collective action is needed to strengthen our approaches to evidence-based care, including better diagnosis and access to effective therapies. We detail how contemporary innovations in inter-operable, web-based, open-source and secure registries can provide the supporting infrastructure to: (i) address a current gap in the flow of data for measuring the quality of healthcare; (ii) support basic research through provision of high-quality, de-identified aggregate data; (iii) enable equitable access to clinical trials; and (iv) support efforts to disseminate evidence for best practice and information for care services. We describe how these aspects of enabling infrastructure will be incorporated into the development of a National FH Registry for Australasia, and proffer that a coordinated response to FH would be enhanced through a global network of inter-operable registries.
Details
- Title
- Role of international registries in enhancing the care of familial hypercholesterolaemia
- Authors/Creators
- E. Hammond (Author/Creator) - Government of Western Australia Department of HealthG.F. Watts (Author/Creator) - Royal Perth HospitalY. Rubinstein (Author/Creator) - National Center for Advancing Translational SciencesW. Farid (Author/Creator) - Australasian Leukaemia and Lymphoma GroupM. Livingston (Author/Creator) - FH FoundationJ.W. Knowles (Author/Creator) - Stanford UniversityH. Lochmüller (Author/Creator) - Newcastle UniversityM. Bellgard (Author/Creator) - Murdoch UniversityH.J.S. Dawkins (Author/Creator)
- Publication Details
- International Journal of Evidence-Based Healthcare, Vol.11(2), pp.134-139
- Publisher
- Wiley
- Identifiers
- 991005540803107891
- Copyright
- © 2013 The Authors
- Murdoch Affiliation
- Centre for Comparative Genomics
- Language
- English
- Resource Type
- Journal article
UN Sustainable Development Goals (SDGs)
This output has contributed to the advancement of the following goals:
Source: InCites
Metrics
214 File views/ downloads
105 Record Views