title: A Registry Framework Enabling Patient-Centred Care.
abstract: Clinical decisions rely on expert knowledge that draws on quality patient phenotypic and physiological data. In this regard, systems that can support patient-centric care are essential. Patient registries are a key component of patient-centre care and can come in many forms such as disease-specific, recruitment, clinical, contact, post market and surveillance. There are, however, a number of significant challenges to overcome in order to maximise the utility of these information management systems to facilitate improved patient-centred care. Registries need to be harmonised regionally, nationally and internationally. However, the majority are implemented as standalone systems without consideration for data standards or system interoperability. Hence the task of harmonisation can become daunting. Fortunately, there are strategies to address this. In this paper, a disease registry framework is outlined that enables efficient deployment of national and international registries that can be modified dynamically as registry requirements evolve. This framework provides a basis for the development and implementation of data standards and enables patients to seamlessly belong to multiple registries. Other significant advances include the ability for registry curators to create and manage registries themselves without the need to contract software developers, and the concept of a registry description language for ease of registry template sharing.
authors.affiliation: Centre for Comparative Genomics, Murdoch University, Perth, Western Australia.
authors.forename: Matthew I
authors.initials: MI
authors.lastname: Bellgard
authors.affiliation: Centre for Comparative Genomics, Murdoch University, Perth, Western Australia.
authors.forename: Kathryn
authors.initials: K
authors.lastname: Napier
authors.affiliation: Centre for Comparative Genomics, Murdoch University, Perth, Western Australia.
authors.forename: Lee
authors.initials: L
authors.lastname: Render
authors.affiliation: Centre for Comparative Genomics, Murdoch University, Perth, Western Australia.
authors.forename: Maciej
authors.initials: M
authors.lastname: Radochonski
authors.affiliation: Office of Population Health Genomics, Public Health Division, Department of Health, Government of Western Australia, Perth, Western Australia.
authors.forename: Leanne
authors.initials: L
authors.lastname: Lamont
authors.affiliation: Office of Population Health Genomics, Public Health Division, Department of Health, Government of Western Australia, Perth, Western Australia.
authors.forename: Caroline
authors.initials: C
authors.lastname: Graham
authors.affiliation: Centre for Comparative Genomics, Murdoch University, Perth, Western Australia.
authors.forename: Steve D
authors.initials: SD
authors.lastname: Wilton
authors.affiliation: Centre for Comparative Genomics, Murdoch University, Perth, Western Australia.
authors.forename: Sue
authors.initials: S
authors.lastname: Fletcher
authors.affiliation: Genetic Services of Western Australia, King Edward Memorial Hospital, School of Paediatrics and Child Health, University of Western Australia, Perth, Western Australia.
authors.forename: Jack
authors.initials: J
authors.lastname: Goldblatt
authors.affiliation: Centre for Comparative Genomics, Murdoch University, Perth, Western Australia.
authors.forename: Adam A
authors.initials: AA
authors.lastname: Hunter
authors.affiliation: Public Health Division, Department of Health, Government of Western Australia, Perth, Western Australia.
authors.forename: Tarun
authors.initials: T
authors.lastname: Weeramanthri
mesh_terms: D004194:Disease / Q000145:classification*; D057286:Electronic Health Records / Q000458:organization & administration*; D004812:Epidemiologic Methods; D016247:Information Storage and Retrieval / Q000379:methods; D008498:Medical Record Linkage / Q000379:methods; D017146:Models, Organizational; D018802:Patient-Centered Care / Q000458:organization & administration*; D012042:Registries; D014904:Western Australia