A Registry Framework Enabling Patient-Centred Care

Studies in Health Technology and Informatics

Volumn 214, Issue , 2015, Pages 8-14

  Bellgard, Matthew I ^a,b   Napier, Kathryn ^a   Render, Lee ^a   Radochonski, Maciej ^a   Lamont, Leanne ^c   Graham, Caroline ^c   Wilton, Steve D ^a,b   Fletcher, Sue ^a,b   Goldblatt, Jack ^d   Hunter, Adam A ^a   Weeramanthri, Tarun ^c  

^a MURDOCH UNIVERSITY   (Australia)

^b Western Australian Biomedical Research Institute   (Australia)

^c DEPARTMENT OF HEALTH   (Australia)

^d UNIVERSITY OF WESTERN AUSTRALIA   (Australia)

Author keywords

data elements; Disease registry; patient centred care; registry description language

Indexed keywords

HEALTH; HYBRID INTEGRATED CIRCUITS; INTEROPERABILITY;

DATA ELEMENTS; DESCRIPTION LANGUAGES; INFORMATION MANAGEMENT SYSTEMS; PATIENT-CENTRED CARES; PHYSIOLOGICAL DATA; SOFTWARE DEVELOPER; STANDALONE SYSTEMS; SYSTEM INTEROPERABILITY;

INFORMATION MANAGEMENT;

CLASSIFICATION; DISEASES; ELECTRONIC HEALTH RECORD; EPIDEMIOLOGY; INFORMATION RETRIEVAL; MEDICAL RECORD; NONBIOLOGICAL MODEL; ORGANIZATION AND MANAGEMENT; PATIENT CARE; PROCEDURES; REGISTER; WESTERN AUSTRALIA;

DISEASE; ELECTRONIC HEALTH RECORDS; EPIDEMIOLOGIC METHODS; INFORMATION STORAGE AND RETRIEVAL; MEDICAL RECORD LINKAGE; MODELS, ORGANIZATIONAL; PATIENT-CENTERED CARE; REGISTRIES; WESTERN AUSTRALIA;

EID: 84952000935     PISSN: 09269630     EISSN: 18798365     Source Type: Book Series    
DOI: 10.3233/978-1-61499-558-6-8     Document Type: Conference Paper

References (10)

1. Y.R. Rubinstein, S.C. Groft, R. Bartek, K. Brown, R.A. Christensen, E. Collier, A. Farber, J. Farmer, J.H. Ferguson, C.B. Forrest, N.C. Lockhart, K.R. McCurdy, H. Moore, G.B. Pollen, R. Richesson, V.R. Miller, S. Hull, and J. Vaught, Creating a global rare disease patient registry linked to a rare diseases biorepository database: Rare Disease-HUB (RD-HUB), Contemporary Clinical Trials, 31 (2010), 394-404.
2. M.I. Bellgard, A. Macgregor, F. Janon, A. Harvey, P. O'Leary, A. Hunter, and H. Dawkins, A modular approach to disease registry design: successful adoption of an internet-based rare disease registry, Human Mutation, 33 (2012), E2356-66.
3. Orphanet Report Series, Disease Registries in Europe. January 2013; Available from: http://www.orpha.net/orphacom/cahiers/docs/GB/Registries.pdf.
4. M. Bellgard, C. Beroud, K. Parkinson, T. Harris, S. Ayme, G. Baynam, T. Weeramanthri, H. Dawkins, and A. Hunter, Dispelling myths about rare disease registry system development, Source Code for Biology and Medicine, 8 (2013), 21.
5. M.I. Bellgard, L. Render, M. Radochonski, and A. Hunter, Second generation registry framework, Source Code for Biology and Medicine, 9 (2014), 14.
6. M.I. Bellgard, M.W. Sleeman, F.D. Guerrero, S. Fletcher, G. Baynam, J. Goldblatt, Y. Rubinstein, C. Bell, S. Groft, R. Barrero, A.H. Bittles, S.D. Wilton, C.E. Mason, and T. Weeramanthri, Rare Disease Research Roadmap: Navigating the bioinformatics and translational challenges for improved patient health outcomes, Health Policy and Technology, 3 (2014), 325-335.
7. D.B. Reuben and M.E. Tinetti, Goal-oriented patient care-an alternative health outcomes paradigm, New England Journal of Medicine, 366 (2012), 777-779.
8. S.A. Webb, E. Litton, K.L. Barned, and T.M. Crozier, Treatment goals: health care improvement through setting and measuring patient-centred outcomes, Critical Care and Resuscitation, 15 (2013), 143-146.
9. T. Graedon, Is Larry Weed Right?, Journal of Participatory Medicine, 5 (2013), e13.
10. S.T. Grinnon, K. Miller, J.R. Marler, Y. Lu, A. Stout, J. Odenkirchen, and S. Kunitz, National Institute of Neurological Disorders and Stroke Common Data Element Project-approach and methods, Clinical Trials, 9 (2012), 322-329.