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A National dementia registry for Ireland: a feasibility analysis

Hopper, Louise orcid logoORCID: 0000-0002-9382-5241, Hughes, Suzanne, Burke, Teresa orcid logoORCID: 0000-0001-8093-9912 and Irving, Kate orcid logoORCID: 0000-0002-9255-4574 (2017) A National dementia registry for Ireland: a feasibility analysis. In: SPHeRE Network 3rd Annual Conference, 12th Jan 2017, Dublin, Ireland.

Abstract
Background: There is an acknowledged urgent need to gather valid epidemiological data in Ireland that provides accurate and reliable estimates of current and future dementia prevalence and facilitates the development of effective dementia health and social policy. This study, commissioned by the Alzheimer Society of Ireland, examined the feasibility of developing a National Dementia Registry for Ireland. Methods: National and international patient registry literature was reviewed to identify registry functions, models, best-practice guidelines, and the legal, ethical, clinical, technology, and financial issues relevant to the creation of a dementia registry in Ireland. Following ethical approval, we conducted two focus groups with people with dementia and twenty-one expert interviews with representatives from Irish and UK research, health, and social care organisations, Irish patient registries and international dementia registries. Discussions followed an agreed structure, were audio-recorded, transcribed and analysed using inductive content analysis. Results: Six themes emerged from these analyses: registry function; registry data; data collection; data management; registry governance and legislation. Three cross-cutting superordinate themes were also identified: benefits and risks, barriers and facilitators, and dementia-specific challenges. Conclusion: These findings provide an evidence-base from which we draw key conclusions and recommend actions to develop a comprehensive National Dementia Registry for Ireland.
Metadata
Item Type:Conference or Workshop Item (Paper)
Event Type:Conference
Refereed:Yes
Uncontrolled Keywords:Dementia; Patient Registry; Public Health; Health Policy
Subjects:Medical Sciences > Psychology
Medical Sciences > Health
DCU Faculties and Centres:DCU Faculties and Schools > Faculty of Science and Health > School of Nursing and Human Sciences
Copyright Information:© 2016 Authors
Use License:This item is licensed under a Creative Commons Attribution-NonCommercial-Share Alike 3.0 License. View License
Funders:The Alzheimer Society of Ireland
ID Code:21663
Deposited On:24 Jan 2017 15:25 by Louise Hopper . Last Modified 26 Sep 2018 13:28
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